Danny Does continue to have an impact on this world long past his last breath. The Danny Did Foundation has received scores of emails and letters from people around the world who have been affected by Danny’s story. Below is an ever growing list of Danny’s legacy to help others. If you’d like, send your story to firstname.lastname@example.org.
Pediatric Neurologist, New Jersey
I am a doctor who attended the SUDEP symposium that Danny Did Foundation was a partner to with the Child Neurology Foundation. Listening to the speakers there completely changed the way that I talk with my patients about the risk of sudden death, and I now understand the importance of having the conversation with EVERY family. Since adjusting my communication on this topic, I have noticed an unexpected benefit: my patients are more compliant with their medications and more open about breakthrough seizures. I wish I had thought of this sooner! I have been using the materials provided at the symposium, and I will be ordering more soon.
Stokes Family, Baltimore, Maryland
I just want to thank you from the bottom of my heart for all you guys have done and are doing. I can't tell you enough how much it means to me. After the Disneyland event, my little boy was so excited to learn he's not by himself. He actually met Owen from Washington at your family meet and greet, who is the same age, has an identical diagnosis and takes the same exact medicine. They've exchanged info and they plan to write each other. It was truly an amazing experience, and we couldn't have been there without your assistance and your knowledge. I'm forever grateful for you and hope to see you all again! Love, Kelley & Jacobi
Piskula Family, Johnson Creek, Wisconsin
I feel so good, like there may be some relief for my husband and I as we sleep. I am just grateful for this foundation. I think of little Danny often since I read his story. I think of his parents as well. They are true warriors of epilepsy. Making something so helpful to others when they couldn't be helped.
Fox Family, Nancy, Kentucky
I just wanted to let you know I appreciate you. You provided us with a monitor about a year ago. I have been able to capture so many seizures and also learn a lot about my daughter's sleep pattern (or lack thereof). Without the monitor, I wouldn't have a clear picture of her night time activity. I often think of your family and send up prayers for you. I am so thankful for Danny and all of the lives he has changed. What a truly remarkable young man. I asked God this morning to let him know how much I appreciate him and what his life has meant to so many. He definitely has impacted us.
Judy, Cypress, Texas
On May 5th, I had a grand mal seizure in my apartment. My 8 year old grandson saved my life. I was unaware that I went into the seizure. Thank God, when I couldn't answer his questions, my grandson called his Mom and said, "Mom, I think Meme is dead, she's got blood coming out of her mouth and she won't talk". An ambulance came and my daughter arrived quickly. My grandson was sitting at the kitchen table crying.
I wasn't aware of anything or anyone for three days. I was put on life support at home and in the hospital. I've had three other grand mal seizures, years ago. I had not been diagnosed with epilepsy in the past. Now I am. Danny Did called me today with the most wonderful news, that I am approved for a Smart Watch grant. My daughter, son and close friends and of course myself, will feel more secure and safer. God Bless ALL of you in this organization and God Bless Danny's family!
Hemme Family, Broomfield, Colorado
Tonight my life changes. Tonight I won't sleep with one eye open.
Because of a little boy named Danny, tonight I go to sleep with the knowledge that if my Melody has a seizure in her bed, I will be alerted in time to respond.
I applied for a grant from the DannyDid foundation, based out of Chicago. The SAMi3 was the monitor that would best fit our needs, but they are pretty expensive and not covered by insurance. I told Melody's story to Danny's Uncle and he listened intently and immediately after hearing about the seizure Melody had in the middle of the night with her head in her toys, he said "We want to help your family. We are going to cover the entire cost of the SAMi. All we ask in return is that you send us a picture of Melody and you using the device, and stay in touch as much as you can so we know how she's doing." That's all they asked.
Unfortunately for this foundation to exist, a spunky little boy named Danny lost his life to SUDEP. SUDDEN UNEXPECTED DEATH in EPILEPSY. His parents were never told about the risks with respect to epilepsy. They were never told about SUDEP. They didn't know to research monitors that would alert them to Danny having seizures in the middle of the night. They didn't know. His parents found him in his bed lifeless at four years old, weeks before Christmas. Sudden and unexpected. After his death, his family started the DannyDid foundation whose goal it is to raise awareness about epilepsy and specifically SUDEP. They provide grants to families like ours to make sure we have the tools that will alert us in time to intervene.
My heart breaks for Danny's family. I can't imagine the grief and sadness, and I hope I never have to know that feeling. What a legacy for this sweet boy. He lives on in the hearts of families like ours who have resources now to decrease the chances of SUDEP.
I am so grateful to this foundation. This is a game changer for our family. Thank you, Danny.
Cool Family, Oswego, Illinois
Thank you Danny Did! You are helping my daughter feel safe and giving her some independence with this Smart Monitor device. Our family can sleep a little better knowing if she has a seizure, we will be alerted to help her. This device will truly save lives.
Ribakow Family, Beachwood, Ohio
Dear Danny Did: Thank you selecting our sons to be the recipients of your support. We are so fortunate to have been taken into your organization. Since we have received the monitors, our nights have changed. We no longer worry about waking up in the morning and finding one of our boys seizing in his bed. We are so relieved that we are able to sleep peaceful nights without constant bed checks. What a difference you've made in our daily lives, improving our peace of mind. Thank you again for your kindhearted donation that makes our lives so much less stressful, while keeping our boys safer.
Stath Family, Chicago, Illinois
This was the first year our family participated in the Danny Stanton Kickball Tournament and will definitely not be the last. I said to my husband how much I admire the strength of the entire Stanton family to take such a horrible tragedy and turn it into something so wonderful.
Campbell Family, Alabama
I know you have connections with parents, researchers, etc, but mostly I decided to reach out because the Danny Did Foundation has always been hear for us, and I value and trust your input. Danny Did is a beacon of hope for parents like myself, and you will never know how comforting that is.
Byron Family, Portsmouth, New Hampshire
We wanted to tell you how thankful we are for your help and support. My heart both broke and soared upon reading Danny’s story. He lived such a free and happy but short life! It breaks my heart that such a sweet little boy was taken so soon. SUDEP is the most scary part of having a seizure disorder and unfortunately, doctor’s do not warn parents about it...or even give us the proper education to prepare us for the possibility. My daughter’s seizures began at the age of two as well. She is now 21 and has had two brain surgeries, a NeuroPace implanted, and countless anticonvulsant drugs, which barley touch her drug resistant form of Frontal Lobe Epilepsy.
Life used to be fun and untouched as in Danny’s case, but years of stitches, head scans and “almosts” at pools and on amusement park rides put a halt to the way Jazlyn lives her now sheltered life. It saddens me that NO is the answer to a lot of her life, but experience and fear have taken over our reality. I try to let her live as normal as a life as my heart will allow... I see that it just isn't enough. I am praying the the SmartMonitor will give us peace of mind and maybe Jaz some freedom. I wish so very much for a cure so our children could live normal and long lives. This just seems so unfair! Please send my deepest sympathy to Danny’s Family and let them know that we appreciate how such a loss can be turned into such a gain for so many in need.
Mier Family, Erie, Colorado
We wanted to tell you how thankful we are for your help and support. Soon after receiving our daughter’s epilepsy diagnosis, we tried to find a way to closely observe her for seizure activities at night without one of us staying up all night. This proved to be a huge challenge and we became more exhausted as time passed. The SAMi camera system works very well and we’d highly recommend it for other families. The SAMi camera gives us the tools to address emergencies in real time, but it also allows us to review videos of possible seizures throughout the night quickly and efficiently. This allowed us to have our daughter monitored with confidence.
After being hit a massive year of medical bills, we are very grateful for the Danny Did Foundation and the support you have provided. Both of our daughters were being evaluated for epilepsy this last year. With multiple inpatient epilepsy monitoring overnight stays in the hospital, the bills were adding up. Thank you so much, once again, for your understanding and your support.
VanAtta Family, Coshocton, Ohio
Thank you so much! This is so very appreciated. I didn't realize they had pillows like this until the Danny Did Foundation and Mommy page I belong to. This will make me breathe better at night. I also learned of the safety tray for the table on your site. So I will be buying that soon. Thank you for the great ideas to help. And will continue to be on your site for new ideas that may be coming. Thanks again to this family for helping us in Danny's memory!
Gabriella, East Preston, Idaho
I wanted to share with you both how my daughter in just one day has a different outlook, attitude, and how the family has peace of mind. I only heard from her once on Tuesday, and she called about some matters of her weekend and just in her voice I could sense relief, ease, new attitude. She sent me a video chat last night and I could tell she had done her hair, makeup, SMILED, looked less stressed. I complimented her on her appearance and just the happy look on her face. She said yes I’m not so stressed anymore because I don’t have people texting me every hour, I don’t have people “freaking” out if she doesn’t respond right away and she feels like she’s able to function in her life now. I didn’t realize how much we had “stressed” her out in keeping tabs on her. We had basically put her in a box to protect her. Now with the watch, we all feel that she can now be “out of the box” and have some normal life and do things as she wishes.
Thank you again so much for this opportunity to start trying to live without fear, and to work to gain back some independence. I hope this foundation realizes how truly life changing this will be.
Fields Family, Georgia
It has been a while since the Danny Did Foundation graciously provided our son with an Emfit device in 2014. I spoke to you several times during this process and you were very helpful and understanding with our situation. We just wanted to thank you again for assisting us and providing a grant. We understand that no medical device is perfect, but his Emfit device has alerted us to almost every single seizure in the past 3 years that have occurred while he was in bed. It has alerted us during the night for seizures we would have never known he was having without the device. The alarm is loud enough that we have heard the alerts on numerous occasions from his bedroom while he was having a seizure during the middle of the night. We have also heard alerts during a seizure while we have been in another room in the house, working in the garage and just sitting on the front porch. The Emfit device has worked greatly for our situation and I would highly recommend it to any other family with a child in a similar situation. Thank you and don't ever hesitate to call on us to help in any way because we know that the Danny Did Foundation is a valuable resource, and we respect all of the tremendous work put into this foundation.
Lagodich Family, Oswego, New York
Thank you for being so kind. The SAMi is exactly what we needed. Our son feels safer while he's sleeping because he knows if he has a seizure an alarm will go off. He's a much happier little boy. I can't thank you enough.
Baynon Family, North Carolina
I am very grateful for what Danny Did has done for epilepsy families. Recently our support group had a doctor from one of the larger neurology practices speak on the subject of SUDEP. Over the past few years I have also noticed that the doctors at Duke are not only addressing it with families, but are sending it home within the discharge paperwork. It's a far cry from 2010 when they didn't tell you or were dismissive about it. Thank you for all of your work. Danny is still doing. :-)
Rodelas Family, El Paso, Texas
Thank you for being able to help us, and thank you for allowing us an opportunity to become more aware and feel some sense of safety for Ayden. Since his sister Alianna worries for her little brother as much as I do, I know she will be as grateful as I am. I cannot express my feelings of gratitude and appreciation enough. What you all are doing makes a world of a difference, thank you!
Gerads Family, Rochester, Minnesota
The SAMi has been wonderful for Mia and our family! It has been helpful in recording and sharing videos of her in seizure activity, as well as break through seizures and restless nights and constant teeth grinding. We had been missing quite a bit at night. Her neurologist and team appreciate the purpose and function of the SAMi as well and recommend it other clients and patients. We have been able to demonstrate it for other families that suffer from Epilepsy. You were the first foundation we reached out to and received help from. We want to thank you for all you have done for us and give back somehow! Love, Melissa and Mia
Fortun Family, Vero Beach, Florida
Words cannot begin to describe how grateful we are for this gift! I am still crying tears of joy and relief in knowing that we are now able to have this tool to help monitor my baby boy in times when we cannot. Thank you so very much.
Bogue Family, Etta, Mississippi
We can not thank you enough for your generosity. I feel like I am doing a great thing for my daughter by being able to purchase this monitor, which could not have been possible without your organization. Thank you from the bottom of my heart!
Neal Family, Dayton, Ohio
Our son is doing great! We've had him off medication for a few years now with no reoccurrence of seizures, and no other major health issues. We had a rough few years when he was going through all of this, but the medicine and your monitor helped us make it through that period. Your organization was a huge help to us, and we refer others to you whenever we have the opportunity. Thank you for everything you do!
Johnson Family, DeKalb, Illinois
Thank you, again, for your help. The Danny Did Foundation brought a lot of smiles and a lot of feelings of relief and hope to our house today. We really appreciate it.
Deskiewicz Family, Idaho
Thank you from the bottom of our hearts for giving us this opportunity to attend the Epilepsy Awareness Day Expo at Disneyland. Being from a small town in Idaho, we don't have access to events like this and honestly, THIS IS EXACTLY WHAT A STRUGGLING MOTHER NEEDED! Our whole family benefited and my husband and I learned a lot. Sometimes I feel all alone with my son and his epilepsy, but going to this really helped me. We really can't say thank you enough.
Hoover Family, North Carolina
I wanted to thank everyone at the Danny Did Foundation for supporting us to be able to attend Epilepsy Awareness Day at the Expo and Disneyland. Our son Cole had a wonderful time and experience. He enjoyed every minute! It was awesome for him to be with other children with epilepsy and the daily struggles others deal with like him. He definitely doesn't feel alone now in this battle. I was able to pick up a lot of useful information at the expo and enjoyed Disneyland as well. We loved the morning picture at Disneyland with the group. Thanks again for allowing this to happen for our family!
Trejos Family, Miami, Florida
We are very happy with the watch. It's Please except my heartfelt gratitude for the generous gift for Logan. The generosity of this foundation will make a difference not just in Logan's life, but in each family in need of assistance with fighting epilepsy and SUDEP. Please know how much you have helped us. You are truly making a difference in the battle!
Fogg Family, Salem, Connecticut
We are very happy with the watch. It's very attractive, and as hoped, our son feels good about it. I feel more empowered at the thought of immediate notification of a seizure. The watch may not stop the seizures, but at least it may give his doctor information to gain better control over them. Thank you so much for your help!
Fellman Family, Toledo, Ohio
There are no words adequate to describe the peace of mind our family has now that we have the Emfit movement monitor for our daughter. All of her seizure bouts onset during the night. Ericka had a seizure one night shortly after the mat was installed, and she did not yell out like she used to, and we were only awakened because the seizure mat alarm rang. I cannot express how much it means to us to have the mat installed. We have had several instances where it alarmed before or just as we realized Ericka was seizing, so it is doing the job, and easing our minds about possibly missing seizure activity. I am quite certain we would have missed many seizures that could have resulted in very bad outcomes without the Emfit seizure monitor alarming at night. It has been truly life-changing for Ericka and for our family.
Emerson Family, Churchville, New York
Our youngest daughter has Dravet syndrome and I have followed your organization for a while. Keep up the incredible work educating others about epilepsy and SUDEP. God bless your little boy and the lives he continues to touch!
Michael Person, Wakefield, Massachusetts
I thought that you would like to see what I did with the setup of the SAMi system. This is so awesome. I purchased a lighting-to-DVI-adaptor and connected the SAMi to my TV. The more I use this the more I love it. I can never thank you enough for this.
Vinez Harwell-Campbell, Virginia
I wanted to say how very thankful I am to your family that you founded this organization. Yet, I am so very sorry that we are meeting under these circumstances. I hope it gives your family some comfort to know that you are making a difference in lives of children, like my son, that without your efforts, he may never have found the protection of the seizure detection monitors to keep him safe. Please know that your love for Danny and other children impacted by epilepsy continues to inspire others, like myself, to do what they can to raise awareness about epilepsy and SUDEP. I hope I can pay it forward half as well as your family has.
The Bauch Family, Wilmington, Vermont
Thank you so much for your support. It is by far the greatest thing that has happened throughout this whole experience. It means more than you could ever know.
The Reynolds Family, Sayre, Pennsylvania
I want to thank you from the bottom of my heart for helping us with the purchase of a Smart Watch monitor. Our son just returned home from long term EEG Monitoring. Our projected stay was anywhere from 4-14 days, depending how fast he had the amount of seizures it takes to get enough data. We were there for only five days. I spoke to his Epileptologist about his receiving a grant from The Danny Did Foundation for the Smart Watch. She actually took the time to research it and was ALL thumbs up about it. Tanner has the type seizures that after the Tonic Clonic (Grand Mal) seizure is over, his brain activity goes flat for about 15-30 seconds, which affects his breathing. Having the monitor will give us a little peace of mind knowing there is another watchful mother's eye on him. Thank you!
Christy Fox, Nancy, Kentucky
I am still in disbelief. I am SO thankful that you are going to help with the monitor. I've been thanking God for you and your family since we talked on the phone. Thank you for helping others. Thank you for speaking out. I appreciate what you are doing and I know that you are saving lives.
Sharon Bollum, Los Angeles, California
Thank you again for the generosity of the Danny Did Foundation. I had no idea what to expect out of attending PAME conference, but it turned out to be life changing for me. I learned so much by listening to the presenters. I learned that Epilepsy is now being connected to migraine headaches, Apnea and SIDS. I grew up having General Tonic Clonic seizures until the age of 21. I’ve suffered migraine headaches since I was a tiny child. My first child died of SIDS, when she was less than a month old. My nephew Russell died of SUDEP two years ago. To hear that all of these things can be connected was heart stopping. Literally, I sat in my chair trying not to get overwhelmed.
I’d always considered Epilepsy a random defect and that I’d just been unlucky. I would have never known about any of this if I hadn’t attended the PAME conference. I’d have simply continued to believe that my children and grandchildren had nothing more to fear from Epilepsy. I will be forever grateful for your generosity. Without your travel grant, I wouldn’t have been there.
Mbong Family, Detroit, Michigan
I just wanted to tell you that the SAMi monitor is amazing and has caught every seizure my daughter has had since we got it. And because she has so many different kinds, being able to show the doctors the recordings is amazing. She has been doing very poorly unfortunately, and just got released from her 19th hospital stay this year. This time in the ICU again, but I wanted you to know that we are very glad to have this device for her.
Anna Potapov, New York, New York
Thanks so much for your great work organizing the PAME conference. The quality of the panels, the level of engagement, and the personal stories of patients and their families made this a truly amazing experience. You have built a leading platform impacting thousands of lives and we share your mission to transform the outcomes of individuals living with epilepsy.
Brandy Berry, Midlothian, Texas
I wanted to thank you so much for all that you have done for me. I can't tell you how hard my life has been with my health. I am hindered in so many ways, but I push myself for me and my family. Please let me know if there is anything I can do to help this foundation and help others. I am excited to test out the watch, and I can report anything that has saved me with the watch. I am not sure if that is something you would want or need to know, but that is the least I can do for all the help you have given me and my family. This foundation will always be a part of my family and I am forever grateful.
Keigher Family, Melvin, Illinois
We received the monitor yesterday. Set up was easy...the directions and supplies were perfectly provided! I cannot thank you enough for purchasing this for our family. My husband and I are so grateful. Today we also received your packet from the Danny Did foundation and the information on SUDEP. We are attending a symposium in San Francisco on daughter's specific type of epilepsy, PCDH19, female clustering epilepsy. I am sure they will also be talking about SUDEP. I will definitely be talking about the Danny DId Foundation and talking about SUDEP with other families that are living with this fear.
Bish Family, Erie, Pennsylvania
This is so amazing. Our daughter is beyond thrilled and so excited to have this resource. I can not thank you enough for this wonderful gift. You guys are just truly amazing! This gift will not only help her but it will help our son. He was the one who found her the first time, so he has not had a good sleep since. I am hoping he will now finally sleep through the night. Thank you again!
Lauman Family, St. Louis, Missouri
Thank you so much for making this resource a possibility for our family! The comfort and relief this offers me and my husband is huge. We look forward to sharing what Danny Did has done for us. We will be spreading the word. We are grateful to have been directed to the Danny did Foundation!
Marle Family, St. Louis, Missouri
We thank the Danny Did Foundation so much for the SAMi Monitor. I am happy to say that even though our son still wakes up every night, we are now sure that it is not because of seizure activity (aside from myoclonic jerks). He apparently moves continuously throughout the night to the point of waking himself up, which might be a side-effect of the epilepsy medications. We have since purchased a bed rail. He will probably have a tonic-clonic in his bed at some point in the future, but we are definitely more assured that we will be able to catch it with the SAMi alarm feature and then intervene. The SAMi has already given us some peace of mind, and we are very grateful for your help.
Baylis Family, Guilford, Virginia
Our son Brennan is 22 months old. He was diagnosed with epilepsy at 5 months old but was having seizures in utero. He's has about 8 different seizure types. He hasn't had a scary seizure in almost 8 months which is absolutely amazing. He has lissencephaly which along with the seizures has affected every aspect of his life. He's mentally about two months old, very hypotonic, relies on a feeding tube, and has an undiagnosed breathing problem. We are super excited about going to Epilepsy Awareness Day at Disneyland! We live on a little peninsula off of Virginia called the Eastern Shore and we are pretty much as far east as you can get from Disneyland. One thing he can recognize is Mickey Mouse's voice, so I'm very excited for them to meet. I also cannot wait to connect with other families going through what we go through every day. This trip wouldn't be possible with the Danny Did Foundation and we are beyond grateful for this opportunity.
Martin Family, Charlotte, North Carolina
Our family cannot thank you enough. This is the answer to prayers, the answer to my constant worry and lack of sleep. As a mother of a child and a wife of a husband both with seizure histories, I have so much on my mind worrying about their safety. This will definitely be a major help in our family as the arrival of our second child is quickly approaching. From the bottom of our hearts we send our utmost appreciation for this gift!
King Family, St. Paul, Minnesota
We are now keeping an eye on my babe while he sleeps in thanks to the Danny Did Foundation! Without your support, this wouldn't be possible. Now Emeric, who just turned 12, can have a little independence sleeping while the family has a little peace of mind, thanks to our newly gifted SAMi Camera. And an additional thank you to your CA ambassador Cindy Mitchell, for guiding me to the Foundation. We are forever grateful and will find a way to pay it forward. Thank you, thank you, thank you!
Murillo Family, Chicago, Illinois
Thank you for providing such awareness and support! Your webpage helped comfort me after my son's first seizure. He stopped breathing and my husband frantically performed CPR on him. I had doctors tell me seizures were "no big deal" after I saw my son turn purple and lifeless. I know how easily we could've lost him. I know that seizures ARE a big deal! It feels great to have people like you, providing us support, information and confirmation that we are right to worry about seizures. We need to stop this mindset of seizures being "harmless", as our former pediatrician would say. Thank you for giving us parents a voice and a place of comfort, love, encouragement and support!
Lake Family, Miller Place, New York
We received my daughter's monitor the other day. Since then, I have spent hours trying to come up with the right words to write my 'thank you' post to the Danny Did Foundation. I could have probably spent weeks looking for them, until I realized that there are just not any words that could be written to describe complete strangers stepping up and potentially saving your baby's life. Three months ago, I didn't know who Danny was or his story. Today, I know him. I remember his face and his story. I found a amazing Foundation to support and feel like our family has their support. I wish my words were enough. I just hope Danny's family and all the people who help and donate to Danny Did know that they are making a difference. I have no doubt that my girl has gained an amazing angel watching over her.
Hedgepeth Family, Winston, North Carolina
There aren't enough words to describe how thankful my family and I are for your foundation. We received our son's monitor yesterday and installed it that night. We have had so much peace of mind in this short amount of time just knowing we have "extra eyes" to help us ensure our son remains safe. The Danny Did foundation is truly a blessing and we will be forever grateful. Danny's family will always be in our hearts. We thank you from the bottom of our hearts for your support and generosity to families like mine who live with epilepsy everyday.
Phan Family, Rosemead, California
My husband and I are so very grateful for this generous gift from your foundation. We will be happy to spread the word and brochures about the Danny Did Foundation. You really are doing so much great work for families with epilepsy and promoting SUDEP prevention. We cannot thank you enough.
Lundgren Family, Columbus, Ohio
I want to tell you how much I appreciate the Danny Did Foundation and what they have taught me and helped me provide for my daughter. I am so grateful for the Sami Monitor. It has helped so much. I also appreciated the candidness in which you spoke about SUDEP. I honestly was never told about it by our neurologist. When I started to do research and try to find others to connect to I couldn’t believe what I was reading. I am so thankful for the knowledge and have been spreading the word to others that I know. I think the work that you all do in Danny’s memory is amazing. Thank you again for all that you have done and will do in the future for me and for others!
Atencio Family, Coeur d'Alene, Idaho
I want to extend my most heartfelt thank you to the Danny Did Foundation for helping our son Ethan get the SmartWatch. It came in the mail last weekend and he wears it daily. He also wears it every night, which has allowed me to take the baby monitor out of his room. The peace of mind that we now have is priceless and life for Ethan (and myself) has regained a sense of normalcy that it has had since before his seizures began. Additionally, I received the materials you sent and will share them with his neurologist, who we will be seeing next week. I want you to know that the Danny Did foundation has given us a wonderful gift and I am so very grateful. Thank you all, from the very bottom of my heart. Danny, and all of you hold a very special place in my heart.
Christine Jones, Anaheim Hills, California
After bringing my 22 month home from the ICU after three days of status seizures (for the second time), I started researching online. She had just been diagnosed with a rare type of epilepsy. The term SUDEP was never mentioned to me anytime at any hospital we went to in search of answers. I came across Danny's website and his story. He has changed our life and possibly saved our baby girl. Danny imprinted on us, and we now have a seizure alert dog and monitor. Because of Danny and everyone else that shares their story, we are informed and equipped.
Dena Nokes, Quincy, Illinois
I want to thank you for everything you've done for Dawn. We truly appreciate all the provisions you have given to her and the peace of mind in knowing someone will help her in a time of need. Your foundation is unbelievable and I can't thank you enough.
Tirado Family, Amarillo, Texas
We just wanted to let you know that we received the monitoring system on Saturday, and our daughter has slept in her room the last two nights, all night long. It is a very good system and we are happy with it and how advanced it is. What a blessing your foundation is. We hope that we can help out in the future. Thanks also for introducing us to The Cute Syndrome Foundation so that we can meet other SCN8A families.
Jackson Family, Huntsville, Alabama
Tre and I just wanted to let you know how extremely grateful we are for the Danny Did foundation. I have been able to sleep a lot better knowing that the SAMi system is helping to monitor activity for Tre. I know it is not a 100 percent cure, but it helps to have an alert sent in the event of something I might miss. Every day more children and adults suffer and die from seizures, and the products that your organization help to provide give us peace of mind. It is with a grateful heart and humbled spirit that we are forever blessed that you help us and more families like us.
Kerswell Family, New Milford, New Jersey
I just wanted to write a quick note that we received the Emfit device last week. We set it up and tested it out and it's wonderful! I love that the alarm is loud but not blaringly loud. It's fantastic that if movement stops, the Emfit stops beeping and doesn't require us to go in and reset it. I know that no seizure monitor is 100 percent full proof, but this will go a long way to help us sleep a bit more soundly. It's so nice to have a monitor that doesn't have to be attached to any part of our daughter's body! This is such a gift to us and our daughter.
Haakenson Family, Davenport, Iowa
I wanted to thank you and the Danny Did Foundation for getting our daughter the SAMi Alert device. It has caught about 20 seizures on video since we hooked it up the day we got it. We are so thankful we can be certain now if we hear her that we know if she just kicked the wall or if she was seizing. Our thanks again.
Sindowski Family, Hickory Hills, Illinois
We just wanted to say thank you. We were granted a Sami monitor a few months ago for our 3 year-old son Harrison, who has LGS. That monitor has changed our lives! We have already caught 5 tonic clonic seizures he has had in the middle of the night and have been able to rush into his room and stay with him to make sure his breathing is steady and he comes out of it safely. All of these seizures we never would have caught on our old video baby monitor while sleeping. The monitor has allowed us to sleep a little easier knowing we will be alerted to his distress and able to show his doctor. Thank you isn't nearly enough for the safety and piece of mind the Danny Did organization has given us and we are thankful every single day for you're amazing gift. Thank you for ALL you do for kids like my Harrison, it has changed our lives for the better in an ongoing battle against this unrelenting enemy we call epilepsy. Thank you, thank you thank you. A very appreciative mom and dad of a little Superman.
Hastie Family, Mt. Washington, Kentucky
The Danny Did Foundation has truly provided us with a useful tool to help protect our daughter. It has already provided her doctors with valuable information! She was sick this week and had more trouble with seizures. I spent last night watching her monitor because her respiration rate was alarmingly low. After double checking to make sure it was in fact under her heart and checking the count manually, I can truly say our new Emfit QS device accurate. Her pediatrician was thrilled to have this information from her seizure. He was able to look at the data and see two places where he believes she had seizures and pinpoint that in both spots her respiration rate dropped suddenly.
Tonight, we will watch her monitor again and have been given a baseline of when to take her to the hospital. We didn't know she was having such low respiration rates. In fact, they were so low her doctor said her brain was not properly alerting her body to breath and it was a serious concern. Thank you for giving us a tool that will help keep her safe and protected! I told our doctor we were gifted this monitor by The Danny Did Foundation. He was very thankful because it will also help them to treat her appropriately.
Furlong Family, Culpeper, Virginia
Thank you so much for funding this device! We set it up and within the first hour of sleeping, we already have some footage to share with our neurologist. The setup was very simple, and Blake loves his new camera. It has a circle of red lights that he loves to look at. The app makes it so simple to look through all of the alarms, and the events that didn't trigger an alarm as well. This will truly change the way we monitor Blake, and ensure we are well aware of any unusual activity. I can't thank you enough for helping us out, it means the world to us all! Thank you for all that you do.
Moultrie Family, Raleigh, North Carolina
Words can not explain the gratitude in our hearts for you caring enough to help our family and others to cope with epilepsy. We received and has now installed the SAMi. I slept so well last evening that I awaken with enough energy to start my day with happiness. I will share the information with the Epilepsy Support Group that I attend monthly. Additionally I will seek approval to post the brochures in the waiting room at Duke Medical center (where my son receive his medical treatment). I would love to do more to help with the Danny Did Foundation. The stories broke my heart. After hearing of SUDEP, I became more vigilant and conscious of monitoring my son during his sleep. I also campaign very strongly to the care providers, insurance industry, social workers, and other health care professionals, the need for our loved ones to be monitored while they are asleep, due to nocturnal seizures. Thank God for the creation of your foundation! My son has always feared that he would die before age 30. However, he is now 34 and living his life to the fullest. Just as Danny did.
Justman Family, Dallesport, Washington
This is the best gift we could have ever received. I have happy tears today. This is the best thing we have had happen in months. Thank you so so much!
Michele Mardi, Streamwood, Illinois
Thank you again for all of the work you do and allowing my family to have this amazing device. I believe that this device alone with change the lives of many people who suffer from epilepsy. Our daughter is the queen and heart of our family. Thank you again from our family to yours.
Freitag Family, Sacramento, California
I just cannot say thank you enough. My son, Robbie, now has his Smartwatch programmed and it is ready to go. This takes some of the pressure off of worrying about him when he is alone. He is aslo feeling more confident now. God bless you guys.
Tim McDonald, Chicago, Illinois
I just wanted to say thanks for all that you do. It's a lifelong dedication to Danny and I just think it's amazing. He makes a difference every day in many lives. His spirit is still alive and always will be, and no one can take that away from you. The marathon and my running helps me to cope with epilepsy and beat the odds, and being a part of your team is an inspiration.
Keding Family, Davenport, Iowa
Our family is eternally grateful for the generosity of the Danny Did foundation. Without their kindness and help we would never have been able to have provided our son Bradley with the SAMi monitoring device. We have spent years of anguish and so many sleepless nights from the ongoing worry of Bradley suffering through countless Generalized Tonic Clonic seizures. The SAMi device will provide a sense of peace of mind and security and allow Bradley to have independence at night to sleep without one of us beside him. We can not thank you enough. It will be a godsend to our family, as well as all of the families you have helped over the years. Thank you from the bottom of our hearts!
Stevens Family, Hornell, New York
I cannot thank you all enough for providing this device for our family. My daughter is so excited that it is coming and is already feeling a little more peaceful that she will be safer at night. I am hopeful it will allow me a little more peace of mind too so that I can be a more rested caregiver. Thank you so much!
Sindowski Family, Hickory Hills, Illinois
I really cannot thank the Danny Did Foundation enough. I feel like a huge weight has been lifted just knowing we will have something safer for our son to be monitored. We are definitely doing a happy dance here! Thank you to the Foundation for your amazing generosity.
Belicia Espinal, Chicago, Illinois
My first college essay was about a very precious gift given to me. To me, the most precious gift ever given to me is my SmartWatch. I am very grateful to Danny Did for it. I also want to thank you for the foundation. I find it so moving that you were willing to share Danny's story and create such a huge cause that changes so many lives. It really changed my life. I am going to college on the bus now, and my mom isn't too worried about that like she would've been if I didn't have the SmartWatch. I've gone out with friends a few times as well. Also, my mom knew that when college came, I would need my own privacy, but the thought of me having a seizure made her a little uneasy. Well, over the summer, she fixed up my room! I have my own bed now. It was really over whelming when we were putting together my furniture, a good overwhelming. I'm very grateful to God, the foundation, and to you all. I have my independence back, and I'm able to feel like a college student. I just make sure I'm wearing my watch while I'm sleeping. Another thing that brings my family ease is the anti-suffocation pillow. My grandma bought it for me. If it weren't for the Danny Did Foundation, we wouldn't have known about it. Having both the watch and the pillow brings us ease. Thank you so much!
Saunders Family, Jacksonville, Florida
My daughter has had seven tonic-clonic seizures in the past month. All have occurred during sleep. The last two were within four hours of each other and she was temporarily paralyzed after the last one. It was terrifying! I, like you, had never heard of SUDEP. Your website was the first I had heard of it. I have been sleeping on my daughter’s floor for more than a month now in order to keep her safe! Her doctor at the Mayo Clinic has advised me to call 911 and have her transported to the emergency room after each tonic-clonic seizure. She has also has up to 20 focal seizures each day. This has been such a difficult time, especially as a single mother. Epilepsy has taken over our lives. Thank you for your support. I am sorry for your loss. Your little boy was beautiful! Thank you for making others aware of SUDEP. I hope the knowledge I have gained will help me keep my daughter safe.
Ramos Family, San Jose del Monte, Bulacan, Philippines
Thank you DANNY DID. I'm really happy and overwhelmed for the good news. This device will be the best gift for my son and for our family. I cried a lot when I read about the history of the Danny Did Foundation. I worry it may happen to my only son, but I don't give up because I know God is our side and because of Danny Did's help. I read the seizure safety brochure and it was helpful. Again thank you so much. I include Danny in my prayers.
Heilman Family, East Wenetchee, Washington
I just wanted to take a minute and update you on our progress since we received our Emfit monitor. Kyler was so excited to sleep in his own bed starting the first night we received the monitor. He has now been in his own bed for just over 5 weeks. I have found that everyone is getting a much better nights rest. Not only is this an amazing feeling, but it also helps reduce Kyler’s seizures throughout the day. We cannot thank you enough for this life changing gift, and we look forward to continued progress!
Pearson Family, League City, Texas
Our son Trysten submitted a essay for a $1,000 grant from the Danny Did Foundation out of Chicago, to apply towards attending their Epilepsy Awareness Day Education Expo at Disneyland, California. Danny Did has 19,000 Facebook followers, and kids around the nation were invited to participate. This grant was made possible by the Reyna Family, who lost their 3 year-old child to SUDEP (Sudden Unexpected Death in Epilepsy), through a successful golf fundraising event, with the proceeds going to the Danny Did Foundation. Only eight families were chosen and Tuesday we were notified that WE ARE GOING TO DISNEYLAND! The event takes place in November 2015 and we have not told Trysten the amazing news, just yet. We’re planning a surprise party with his UT-HSC medical team, and will make the announcement to him on Sunday while he’s in the hospital to lift his spirits. What a blessing!
Blanco Family, Spring Valley, Illinois
You guys are absolutely wonderful! Brady is beyond excited for Epilepsy Awareness Day at Disneyland. I can't even tell you how much this means to him, and to me. I'd never be able to give him some of these opportunities if it weren't for the Danny Did Foundation. If Danny Did then Brady will too. Thank you so much!
Magruder Family, Chicago, Illinois
Our son Luke has been seizure free now for 18 months! The Emfit device you enabled us to get for him has been a godsend. It's made us feel like a normal family now because we aren't living in a state of total anxiety when he goes to sleep at night. He feels better and more confident going to sleep by himself, and I don't spend the whole night watching the baby monitor for signs of seizures anymore. Just knowing that it works as well as it does gives us so much comfort. Thank you and the Foundation so much for your generosity. You've made such a difference in the lives of our family!
Buckland Family, McKinney, Texas
I can’t thank you enough for helping us by providing the SAMi device. I really hope this will bring us a little more peace and comfort when going to sleep at night that we will be alerted of my son’s seizures. It breaks my heart that you lost Danny to this horrible disorder. That is my biggest fear for my son as well, and I am trying to do everything possible to prevent that. Danny’s death was tragic, but it is so great to see your family has turned it into something good to get your message out there and help others. So thank you again from the bottom of my heart!
Shana Cantu, Santa Ana, California
I just wanted to thank the Danny Did Foundation for helping me to get the SmartWatch. I really needed it and I got it in the mail the other day. Now I can do the things I couldn't do before, because I was alone. I'm a single mother of three great kids. Now my 19 year-old daughter does not have to always be around me just in case I was to have a seizure, so my younger kids will not be alone. Now I can be mom again, and my older daughter could be a teenager again. Thank you Danny Did.
Nelson Family, Hyde Park, Utah
My daughter Malia received an Emfit monitor when she was 18 months old. It changed our life. I am so grateful to the Danny Did Foundation for giving our family such an amazing monitor. She is now 11 months seizure free, but I'm still able so sleep knowing that if she did have a seizure the monitor will alert us.
Dugan Family, Chicago, Illinois
My prayers have been answered because of the Danny Did Foundation. Because of them, our son PJ has received the SmartWatch monitoring wristwatch that helps to detects seizures. This watch will notify me by text message when PJ is having a seizure. It also sends me his GPS location, and has his phone call my phone so that he can hear me. His seizures are very scary because if we are not next to him, we do not know if he is having them, or even how many a night. So if he starts to have one and we are not around, it could be really bad. But now we will know, so a big thank you to Danny Did! Most people that have seizures or a child with seizures have no idea about SUDEP. Doctors do not talk about this much, but they really need to. SUDEP is the sudden, unexpected death of someone with epilepsy. If you have seizures or know someone with them, please take time out and read about SUDEP.
Plummer Family, Boaz, Alabama
We'd like to thank the Danny Did Foundation for giving my family an Emfit scholarship. The Emfit device is a motion-detecting product that goes under the mattress of your child. With this product we can more accurately watch Annabelle and it will take pressure and strain off my husband and I. This foundation was started by the parents of a little boy named Danny who died in his sleep of SUDEP. It is still family-run and Danny's uncle worked with my family. Please check them out and spread the word to families you know that may have a need for them!
Ciatto Family, Copiague, New York
I wanted to say how much my son Christopher and all of his family deeply appreciate the generosity, concern and support we have been given. We are excited about the arrival of the Emfit monitor. It will finally give Christopher and all of us who love him so very much, peace of mind. We as Christopher's family will continue to do whatever it takes to keep him safe. Our heartfelt thanks go out to all who crusade for people living with epilepsy and those who love them.
Brown Family, San Tan Valley, Arizona
I just wanted to tell you how thankful I am for Danny's foundation. I told my 8 year-old son Daniel Jr. about y'all helping us. He's been helping me so much with watching his brother when I need to take a shower or if I need to run to the laundry room, or really whenever I can't be with his brother Tarin. I know this puts a lot of pressure on him and stress. He's always been my little assistant that tells me when his brother is seizing, and now with your help we can take that pressure and stress off of him. Thank you so much, you're making a world of a difference. Danny Did, Danny Does, and Danny continues to do.
Freeman Family, Ellijay, Georgia
My daughter Jasmine received a monitoring device from your foundation about a year ago. The kindness of your support was not lost on Jasmine. She made a collection jar, which I took to work. The money raised by Jasmine was donated by my colleagues who were more than willing to help. We hope this donation will serve to help other families like ours. Although we were not lucky enough to meet Danny, he and his family will forever be in our hearts.
Cahalane Family, County Cork, Ireland
What an amazing foundation you have set up and very brave parents to have done so. Danny looked like a very handsome little boy and it is a sad and touching story. I'm very grateful you are here for everyone and sorry you've had to be. I hope you have found great comfort in the people you've helped. The information alone that we have researched through yourselves as well has been great.
Kathleen Deese, Doral, Florida
I wanted to say thank you for all your foundation does for the families with needs for the best of our children. For us it is a very big thank you, we have four children and having Edryanee back and forth to doctors offices, hospitals etc. is frustrating when medication still not work for her. Having her in phase one for brain surgery is scary, but I am so thankful to have this help from you guys, and at least now at all I can start having better nights. Gob Bless you all and all those that donate for our children that have special needs.
The Moller Family, Point Pleasant, New Jersey
Thank you so so much. I am astounded that this opportunity exists and has been given to our son. This is one more thing that we can do to keep him safe and I am relieved that after researching and thinking for so long something is actually happening. Even having been able to reach out to people who are aware of the seriousness of Max's epilepsy feels good. I will share my news and support the foundation in any way I can. Thank you again and again.
The Larson Family, Mt. Juliet, Tennessee
I wanted to let you know that we purchased the Emfit Monitor over two years ago for our daughter, Rachel. I found it on your website while I was doing SUDEP research. Our neurologist never mentioned SUDEP to us. Ugh! I cannot tell you what a comfort it is knowing that if she has a seizure we will be alerted, and we have on 5 occasions, only 1 false out of those. I wish I had a camera when we were scrambling and heard her say "I'm okay, I'm okay, I just can't get comfortable." I think I actually ran into our bedroom door that night. Anybody who I talk to about epilepsy (every chance I get) I always mention the monitor and where we got it. I hope one day it will help someone else's family as much as it has helped ours. We will be forever grateful as well as humbled by your strength and love to spread the word about epilepsy after such a terrible loss. You will always be in our prayers.
The Mendez Family, Monett, Missouri
Thank you for your phone call this afternoon. It was wonderful to hear the good news you had for us. I apologize for getting emotional. As much as my son loves his father and me, he has been asking why we sleep with him and not his sister. We have explained to him his epilepsy, but most of his seizures he doesn't remember. This opportunity you have given us will give him some freedom to be like other children, and although we will be just 10 feet from him, and be able to sleep in his own bed by himself. This, of course, will be a huge adjustment for all of us, but we have confidence in the Emfit. Once again, thank you so much from all of us.
The Erickson Family, Bovey, Minnesota
I just wanted to say thank you again for your help with the SAMi. We are so excited to receive the monitor! I look forward to more peaceful sleep and not looking at a monitor all night along. You are doing an amazing thing for the epilepsy community. What a wonderful way to honor Danny.
Lena Brown, Havre de Grace, Maryland
I wanted to say that saying thank you doesn't seem sufficient for the gift that the Danny Did Foundation has given to us. I can't stop smiling and crying happy tears! I think I've called everyone I know to tell them this amazing news. Please send as much information and brochures as you would like. I will make sure to pass every single one out to those who could benefit from the info. You now have a huge supporter for the foundation, here in Maryland. I am also going to look through the website to see how I can purchase a shirt for myself and my daughter so that we can raise even more awareness!
Judith Olimba, Mbale, Kenya, Africa
Thank you again Danny Did Foundation for joining hands with Angel Lexi Community Based Organization to create Awareness on Epilepsy and to help our children living with epilepsy gain courage and live seizure safe lives. The madness and belief that epilepsy is a curse or witchcraft will end with the information you have put in our hands. Danny in Heaven is spreading his angel wings to Africa.
Jennie Vera, Lawrence, Kansas
We are bringing #epilepsyday to the Lawrence, Kansas Public Library on International Epilepsy Day. Awareness, knowledge and resources are key. I'm also proudly wearing my #DannyDid Foundation t-shirt around downtown Lawrence today with my kids - bringing awareness to #SUDEP! I’ve just joined up for the Danny Did Foundation ‘Outreach to Doctors’ initiative. You were my light in the darkness when I couldn’t get any clear information in London, England, following my two year-old son's nocturnal seizures.
The Vargas Family, Carson City, Nevada
I just wanted thank you very much because I received notification I will be receiving Emfit movement monitor for my son, all thanks to you guys. I appreciate your foundation helping my family. I look forward to receiving your brochures so i can give them to everyone I know. Thank you again Danny Did Foundation, you guys are remarkable!
The Webster Family, Grand Rapids, Michigan
I honestly can not explain how grateful I am to the Danny Did foundation and Emfit for this gift. I look forward to 'paying it forward' and will do my best to spread the word about Danny's story and SUDEP, as well as share the information you sent about the foundation. Thank you so much!
The Haakenson Family, Davenport, Iowa
We wanted to send a quick update on Kaitlyn. We have had her Emfit monitor all hooked up and tested. She has had seizures in the middle of the night where it has gone off. I can't thank the Danny Did Foundation enough! She is now switching medications (again) because she has not been seizure free at all in 2015 and the last part of 2014. Thank you again for making the Emfit monitor available to us!
The Neal Family, Washington Township, Ohio
When my son first started having seizures at 20 months, I saw him start to seize while he was sleeping on his stomach. His face turned from his side and went straight down into the mattress. I was there and rolled him on his side, but this seizure lasted 6 minutes and was absolutely silent. We would not have heard it on an audio monitor. We are so very lucky he survived. At that point I had never heard of SUDEP and our neurologist was saying nighttime seizures had little risk of death. I called Danny Did the next day to learn more about monitors. He's nearly 6 now, seizure free for three, and I can only say that because of the monitor they gave us.
The Schleicher Family, Pittsburgh, Pennsylvania
We just wanted to send you a message thanking you and the Danny Did Foundation for everything you have done for us. From supplying information to funding my daughter’s Emfit monitor, to find your foundation has been a God send to us. I can not thank you enough for everything. Without you and the Danny Did Foundation, I truly don't know what we would have done. I was so lost and uneducated. Since we received and installed the monitor, Laci's dad and I have been able to sleep at night, in our own room. We explained everything to Laci and she said that she would have loved to have met Danny. We received the folder that you had sent to us, and we would love to become advocates! Again, I cannot thank you enough for everything that you have done. You and everyone at the Danny Did Foundation are our angels in disguise.
The Craven Family, Elmwood, Illinois
I just got off the phone with my husband, and we are both speechless. After going through all of this stress and so much worrying to get the help and support, we are so very appreciative! It brings tears to my eyes just talking with you, and than of course the financial support for the Emfit! We appreciate it all more than we can express. We will continue to keep in touch. My husband plan to sit down and look at ways we can payback through volunteering. THANK YOU from the bottom of my heart!
The Davis Family, Henderson, Nevada
This foundation was started the very day my son was born, my son who was later diagnosed with epilepsy and then helped by this foundation! You are in our hearts and home Danny.
The Trudeau Family, Chicago, Illinois
I am still incredibly grateful for Danny Did and the Stanton Family. Five years ago when you started your organization was when my youngest son had his first tonic clonic (grand mal) seizure. Your guidance and support helped my family in the darkest hours, and I'm happy to say that my little guy is still here--thriving and seizure-free for many years now. I thank Danny and all of you each and every day for helping my son.
Annemarie Barlett-Rattell, Enfield, Connecticut
I am still incredibly grateful for Danny Did and the Stanton Family. Our thanks to the Danny Did Foundation for giving our little boy added security by funding a seizure monitor for when he sleeps. You gave us the gift of a better night's sleep, diminishing some of my debilitating anxiety, and I won't ever forget that. We will do some sort of charitable donation this year and every year from now on.
The Tumberlin Family, Dallas, Georgia
My son Ryan is the special needs manager for his high school varsity football team. Thank you again for the peace of mind you are giving a single Mom who hasn't had a full nights sleep since Ryan was born. Having the Emfit monitor will give me the back up I've needed for so long. We will forever be indebted to you. Much gratitude. - Stacey & Ryan Tomberlin
The Gray Family, Lititz, Pennsylvania
The SAMi Monitor arrived on Sunday, and it was such a blessing. Last night was our first night to use it. It was such a peaceful night, since Hannah didn't need to wear her bell bracelet (which jingled with every move, and would scare me when she scratched her leg). We even got a few laughs watching what set the alarm off, which thankfully turned out just to be our cuddly three-year-old wanting to be close to her big sister. Getting a SAMi now was definitely a bright spot... with this being the same week her seizures got worse, which led to her starting medicine, which led to side effects. Thankfully, her doctor thinks she'll be used to the medicine soon. Thank you so much for what your organization does. The peace of mind is life changing. Whenever I tell someone about the monitor, I tell them about Danny. I don't know what else to say without crying, so just thank you so much.
The Lockett Family, Ontario, Canada
Thank you again, so very much, for helping to care for our precious daughter. The Movement Monitor will help us to respond quickly to Avery's nighttime GTCs. You have warmed our hearts this holiday; this generous gift is most appreciated. We thank you for recognizing how very important early detection of nighttime seizures is, how terrifying it is for our entire family, and connecting us with the resources we need to monitor our daughter's complex intractable epilepsy, Doose Syndrome. Your kindness will always be remembered.
Karla Rodriguez, Aurora, Illinois
You don't know this but thanks to Danny's story, I am more determined than ever to work with our doctor to find the cause of my sons seizures and to make sure we get him not only the right medicine but the right dosage. Thank You for sharing Danny's story, he was a handsome little boy.
I never had the good fortune to meet you or your beautiful boy, but how this child has impacted my parenting and outlook on life. I first read your story four years ago in a parenting magazine in a waiting room at Children's Memorial. My oldest and Danny are only one month apart, therefore when I see a picture of Danny, then see my son, my heart aches for you. If I get upset or stressed or frustrated with my son, I realize that frustrations are so purposeless and temporary. Your son lives through your work and advocacy. When his face lights up my Facebook feed, I pray for a blessing for him and you.
The Smart Family, Grand Forks, North Dakota
Thank you for your patience and understanding of our families' tribulations in the past few months and your generosity in helping us access the SAMi device. It beyond what words can describe. Thank you again and much love from our family.
The Craven Family, Peoria, Illinois
I can not thank you enough for your information you shared with me. I wish I had learned about your support sooner. Our entire life has been changed, we feel very fortunate to have our daughter. We have learned so much about epilepsy and plan to learn so much more.
The Cassandra Family, Bluff City, Tennessee
Thank you for the wonderful gift you have given to our daughter. The independence it has provided her is unreal. We will spread the word about your foundation and share information everywhere. Again, thank you so much.
The Miller Family, Laconia, New Hampshire
I just wanted to reach out and say thank you so much! We got Kaleb's Emfit monitor and he has been sleeping in his bed again. And I am actually sleeping at night, no longer scared that Kaleb will have a seizure and I will not know. Now that we know about the Danny Did Foundation, I tell everyone his story and about the his foundation. Again, thank you so much for all of your help.
The Heck Family, Tiffon, Ohio
From the bottom of our hearts, thank you again for providing us this monitor. There are no words that can express the gratitude of adding safety to my child's life, and calming the fear and worry. It is a complete blessing. You are wonderful people doing a wonderful thing. Thank you so much!
The Lyons Family, Amhurst, New York
Thank you so much for supporting our daughter Carley! The Emfit has given us the ability to sleep a little easier at night. Your generosity has taken a huge weight off of our shoulders. Carley was so excited about getting her Emfit because it meant that she got a bigger bed, which led to her getting her own room. Epilepsy will not take away Carley's independence, courage or strength. As Carley says, "all you need is faith, love and pixie dust!"
The Dixon Family, Randelman, North Carolina
With it being Epilepsy Awareness Month, we wanted to reach out and say thank you (again) for our sleep monitor. I think of Danny and the change that his life made in our lives and I am so grateful for you guys. So -- THANK YOU so much for all that you do. Thank you for sharing Danny's story and your memories of him with us. We will be eternally grateful for the peace of mind you helped our family receive.
The Espinoza Family, Los Angeles, California
It's been so helpful all this time having the SmartWatch. I sleep a bit more knowing it will let me know if our son John is ok or not. I can't thank you enough. I'm stil unemployed but if there is anything that I can help with the Danny Did Foundation, I'll be happy to do it.
From Phil Skoug, Merrill, Wisconsin
It was a pleasure to run the Chicago Marathon for the Danny Did foundation. I hope to do it again next year. I always like to do things for good friends. Pete and Betty Lazarra asked me if I would run the marathon and couldn't turn them down. I was unable to attend the post race party due to a minor injury during the marathon but I was determined to finish. The shirt and bracelet gave me inspiration to finish for Danny and others that suffer from epilepsy and SUDEP. Looking forward to next year.
From the Howell family, Wahiawa, Hawaii
Thank you once again for this wonderful opportunity to gift our son a Smart Monitor watch. You can only imagine the sense of gratitude and relief that my husband and I now feel knowing that Josh will now have the freedom to live a more normal life. He will be able to play with his friends outside without his 5 year-old brother tagging along in case of a seizure to call for help. With Grateful hearts to the Danny Did Foundation. - Lieutenant Colonel Jeff Howell & Mrs. Caitlin Howell
From the Harden family, New Market, Alabama
We wanted to take a moment to say thank you, again, for the Emfit monitor you gave us two and a half years ago. This a a video I made that hopefully conveys my love. The pictures came from the video and photos of the day I got the call the Danny Did Foundation approved us for Jacobs monitor. To me, the device is the most incredible thing I have ever seen. It picks up all of his movement. This tiny mat is simply amazing. It allows him his independence, and after a few nights of me relearning and allowing the device to do its job, have slept. I feel like I am no longer at the end of my rope. In a very simple and odd way this mat not only tells us he is seizing but gave us some bit of our lives back. This technology NEEDS approval by the FDA. Any further delay in for this life saving application for any child or person with epilepsy by allowing a care giver to render aid or in its absence, a possible worse case scenario, well it's just plain dumb. Please take a second to look at my video and enjoy. Danny Did foundation: Thank you again for your help. We are forever grateful.
From the Neal family, Dayton, Ohio
We wanted to take a moment to say thank you, again, for the Emfit monitor you gave us two and a half years ago. Why today? Our son Elias just finished weaning off of his seizure medication today, and that monitor is a major reason why. We were able to say with confidence that he’d been seizure- free for two years, and we know if he ever has another one the monitor will alert us. I cannot express how much it has meant to us to be able to monitor his nighttime seizures in this way; to let him sleep in his own bed, to let me sleep without the anxiety of him having a undetected seizure. Thank you so much for all you do. We are forever grateful to you for making us aware of SUDEP and giving us the support we needed to make sure our son would not fall victim to it. I can’t imagine all your family has been through, but I hope it brings you some comfort to know how much good you have done in Danny’s name. We have given Danny Did SUDEP materials to our pediatric neurologist, the special needs preschool our son attends, and other parents who sought me out after their child had a seizure because we were never afraid to talk openly about his illness. The word is spreading and parents are taking action to protect their children, all because of how you chose to honor your son.
From the Montgomery family, Queen Creek, Arizona
We received the packet of materials this week you sent out and do plan on sharing this with our family, friends and those we share our story with. We also want to express our gratitude for the funding you so generously provided our family to assist in the purchase of the EmFit Movement Monitor for our son. We are so impressed with this equipment and ended up buying a second sensor since he is in a full size bed. This is really a great piece of equipment and so sophisticated with no false alarms! Luckily, Mitch has not had any further seizures since his initial episode and he has been very happy and healthy. However, we want to stay on top of monitoring him and this has helped tremendously to put our minds at ease knowing that he can be in his own room at night. Thank you for your follow up and for everything you do! We are so much more aware because of the work you all do every day.
From the Brannon family, West Carrollton, Ohio
We wanted to let you know just how grateful we are for the monitor. We have had it for 2 weeks. Just last night Abby had her first seizure since having it. It was wonderful to be alerted and be there for her. And also when I got in her room her face was in her pillow. So very thankful to be there to keep her safe. Thank you again for whet you guys do to help others. Not a day goes by now without me thinking and praying for your family.
From the Hansen family, Monmouth, Oregon
We just wanted to say thank you again for the generous gift from the Danny Did Foundation. We have been fortunate that Daniel has not set off any alarms at night, but because I know the bed alarm will wake me, I’ve been able to sleep better as so with my husband and my son. It’s been such a relief to have this bed alarm and know it will alert us if needed.
From the King family, Lincoln Park, Michigan
I just want to express my gratitude and appreciation to The Danny Did Foundation…I cant describe the feeling of ease and comfort I will have when my son will be sleeping on his Emfit motion detector and I will be able to fall asleep knowing we will have the help, and a peace of mind knowing we can detect a seizure in his sleep. THANK YOU.
From the Murphy family, Newfane, New York
The Emfit Monitor has been working amazing for Jay. We were so shocked at the amount of seizures that he was having during the night that we were not aware of prior! One night the monitor went off and we ran into his room to find him seizing and turning blue. Had we not had the Emfit monitor I honestly believe we would have lost Jay that night. A monitor for Joel would be wonderful and we are so thankful for your help.
From the Beahm family, Waupun, Wisconsin
We wanted to tell you again how much we appreciate what the Danny Did Foundation has done for us! We have felt so much relief just knowing that our son is safe while he’s sleeping. We have told our neurologist about Emfit device (she has never heard of any monitoring devices) and she wrote down some info about your foundation so she could check it out. If you would like to send some brochures to her office, I know she would be happy to display them for other families.
From the Lawrence family, Lima, Ohio
Our family cannot thank you enough for your help with getting the Emfit monitor. This is the beginning of a long journey for Casen and the peace of mind that this monitor offers for our family is beyond words. We appreciate all the resources you have put us in touch with and hope to continue to learn ourselves as well as reach out to others and raise awareness. Danny’s story gives us all strength and hope that we can make good things come from all this!
From Leanne, St. Lucie, Florida
We just received the device for our son Justin. He is so excited about sleeping in his own room tonight. You have touched our heart so deeply with this huge gift. We just can’t put it in to words how this will change our life. Justin told me it will be nice to know that this device has his back. Thanks for sharing your story and Danny’s life. Thanks for having my son’s back.
From Rebecca, Godwin, North Carolina
Words can not express the way I am feeling right now. Thank you guys so very much. We can actually have our life back. Our daughter can be a typical, independent teenager now. Last night she said to me, ‘mom I wish you would let me sleep by myself.’ I told her, ‘when we get that monitor, it’s a deal.’ She said thank you with a smile and rolled over and went to sleep. Thank you, thank you, thank you! Love you all and Happy New Year!
From Annemarie, Enfield, Connecticut
Words could never say enough but, thank you from the bottom of our hearts for helping provide something so amazing to our sweet boy. The thought of having something with my baby to help protect him is already lifting our spirits, and I promise you we’ll spread awareness about your wonderful foundation
From Jan, Chicago, Illinois
I commend The Danny Did Foundation for your tireless efforts to raise awareness of SUDEP. The impact you have had on educating parents, kids, organizations, hospitals, doctors, government agencies, etc. is nothing short of amazing. In addition, your generous donations have helped to save lives of those with epilepsy. Many parents can hopefully sleep a little better at night thanks to Danny Did.
From Giovanna, Harrington Park, New Jersey
I don’t know how to thank you enough. I really hope this resource helps our daughter to feel a little bit more like a teenager. Maybe this will help to put a smile on her face more often. What a wonderful thing you are doing to help other people.
From Alyssa and Ron, Aumsville, Oregon
With tears of shock and gratefulness we say thank you for helping us get the Emfit Monitor. Last night we set it up, did the quick test, and put our son TJ to bed for the first time. He wasn’t asleep 90 minutes and the alarm sounded. We really didn’t think he would be having a seizure, but he was. He was having a grand mal. This wasn’t his longest seizure, but he was turning blue in his whole face and ears, which is the worst we have seen. I know that we shouldn’t live in the “what ifs” but what if we wouldn’t have been alerted. Thank you for the blessing of this monitor. We will be trying our best to raise more awareness and give back in any way possible.
From the Aguilar Family, Chicago, IL
We are very thankful for Danny because we have now a monitor. Is very sad the story of Danny and we pray for him. God bless you and Danny for the mission and work that you do every day to help people like us. Thanks so much in the name of our family and our son Javi.
From Chelsea, Sacramento, California
Our nephew was recently in ICU for a week following a series of bad seizures. The Emfit monitor did just what is was supposed to and alerted us so we could get him the immediate medical attention he needed! The monitor has now alerted us three times of seizures, twice in the middle of the night and once at naptime. I don’t know what I would have done if it weren’t The Danny Did Foundation and the Emfit monitor. I can’t thank you all enough for the peace of mind you have given us. This is a picture from his 2nd birthday – Happy, Healthy and Strong!
From Rebecca, Las Vegas, Nevada
I just wanted to express my pure gratitude once again and share a bit of info with you. Our son recently had another Keppra increase right before receiving the Emfit monitor from Danny Did. We thought the increase was helping, because for the most part he seemed to be feeling better. He has however been having some behavioral problems at school, that can easily be credited to Keppra rage. Since getting our Emfit it has been alarming us about 2-3 times a week and consistently around 12am and 5 am. We now believe Owen has continued having seizures in his sleep even with his medication increase and with the Emfit we would have never known. I think his behavioral problems are due to pure exhaustion because he is clearly is not getting restful sleep. We will never be able to thank you enough!
From Maria, Curitiba, Brazil
My name is Maria and you and Danny Did Foundation have recently helped my young nephew Thiago, from Brazil, to acquire an Emfit Monitor. I will surely spread the word about Danny Did foundation among my acquaintances and next-of-kin. Love, hope and care build perennial bridges between people, no matter how far they seem to be. My family and I will be forever grateful to your kindness and generosity. Danny and the Stanton family are now a part of us.
From Amanda, Creston, Ohio
We want to thank you again for supplying my son with an Emfit monitor. You have given him the freedom to sleep in his own bed again and for me to rest a little easier at night.
From Miriam, Miami Beach, FL
I want to thank the Danny Did Foundation with much sincere gratitude for providing me with this SmartWatch! It is something that I know will be life changing for me, as well as my husband, and our baby-to-be! Thank you also for sharing the knowledge you have provided to myself, and others, who live with epilepsy about other options, that can help us in our current circumstances. As I mentioned to you, I am expecting, and it is very comforting to know we have some form of alternative assistance, in the case of having an ‘event’ occur. May you and your family be forever blessed for your time, energy and efforts that you sacrifice and commit to helping others with epilepsy.
From Leah, Ontario, Canada
I am overwhelmed with gratitude towards the Danny Did Foundation. It was with a heavy heart that I read Danny’s story. There are no words I can write to express my condolences to your family. I am deeply sorry for your loss. And I know that fear…It is a fear I have faced every night when I put our son to bed. The invention of the Emfit Movement Monitor is such a technological break through, and I am so grateful to you and the Danny Did Foundation for helping for helping us.. No, it won’t cure his epilepsy – an it won’t control his seizures, but it WILL make such a difference in our lives – in our peace of mind – as I put my only child into the hands of God every night. True, I am powerless over his epilepsy – but having the monitor will help calm my husband and I, knowing we have it to alert us to a night time seizure. Thank you so very much.
From Charli, Indiana
I have a monitor in the mail. I am in happy tears. My son’s life and ours as parents are going to greatly improve. Thank you for all you are doing and fighting for, it is amazing!
From Maeve, Chicago, IL
Thank you so much for having our high school basketball team volunteer at the Bounce Out the Stigma camp! I had so much fun and working with the kids was life changing. Seeing their joy after making a basket was great! If you have any other camps like that I’d love to participate again. Thanks again.
From Diane, Philadelphia, PA
We wanted to let you know that we recieved the Emfit monitor on Monday and set it up in our daughter’s room. She decided to test it out that very night and had a seizure at 12:30 am. The monitor worked perfectly and thankfully the seizure wasn’t too serious. Our family definatley feels more at peace during night knowing that the monitor is there. Again, thank you so much for all your help.
From Tyler, Phoenix, Arizona
I would like to personally thank you for the financial help you have provided for me to obtain the SmartWatch monitor. In the memory of Danny, my family appreciates the security of knowing that I am going to be a little bit safer since they will be notified if I am having a seizure. We can not express how happy we are that you are able to provide us with this assistance. We can sleep a little bit easier at night and for that we will be forever grateful. Thank you.
From Chelsea, Sacramento, California
Please email me or mail me any brochures/flyers so that I can get the word out here in Sacramento. You make a difference with every life you touch and more people that know about the wonderful things that you guys do, the better!
From Monique, Luxembourg
We are extremely overwhelmed and in shock of this gigantic donation being given to us here in Luxembourg. I just called my husband and he also got very emotional on the phone and we are both speechless. We will always remember the kindness that you have offered to our baby Keyaan. In my heart, I wish I could do more than just spread the word of the Danny Did Foundation. Thank you to Emfit also for making this possible, thank you to you for taking the time to Skype, and thank you to your team for arranging all this.
From Cade, Billings, Montana
Thank you again for your support in securing my brother’s SmartWatch. It has already reduced many of our worries and helped to improve his lifestyle.
From Heather, Glastonbury, Connecticut
Thank you for enabling such an amazing product that has potentially saved so many lives. Because of the Danny Did Foundation providing my son with the Emfit monitor we have been alerted to many seizures we may not have ever caught before. My little one no longer expresses being fearful of going to sleep and I am able to have a better fence of security throughout the night.
From Amanda, Midlothian, IL
I am calling Emift tomorrow and I will tell them Danny Did went me when I use the contact you gave me. Knowing that it will also detect a lack of micro-movements is a bonus and this will be a lifelong investment for our girl. I cannot thank Danny Did enough for bringing SUDEP education to families like ours!
From Jacy, Jasper, Alabama
Our 15 month-old son has epilepsy and has been having seizures since he was 4 months old. Our doctors told us there was not a monitor to detect seizures and did not initially advise us about SUDEP. My sister found your foundation and through that we learned of the Emfit monitor. We have had the Emfit monitor on his crib since last May and it recently alerted us to his first night time seizure at 3:30 am. His seizures have never stopped on their own and this one was so bad he ultimately was put on a ventilator and airlifted to Children’s of Alabama. He is doing good now and is back at home. My husband and I feel forever indebted to your foundation because we know it helped save our son’ life. We are so sorry for the loss of your precious Danny. The work you all are doing is impacting lives including that of my son and we will be supporting your foundation now and in the future.
From Kirsten, Spring Hill, Florida
Words can’t express how much your phone call last night meant to me and my family. Our family is truly grateful that your foundation is willing to help us obtain the Emfit monitor. I will feel better about giving Meghan the space and independence she needs and I might even be able to sleep knowing she has an added protection. Again I can’t thank you enough.
From Doug, Farmingville, NY
Since the Danny Did Foundation generously provided us with an Emfit Movement Monitor for our daughter, it is so much easier to relax a bit at night. Another positive is the chance for her parents to sleep at night. This is quite a sophisticated piece of technology with an impressive sensitivity setting. Luckily, we have had a very limited amount of times that we have had to react to it but we know that it is going to be there for us when it is truly important to be alerted. We cannot thank you enough for what you have done for us and what you do everyday for families everywhere. We continue to get the word out about Danny and the Danny Did Foundation.
From Asher (age 2), Dacula, Georgia
My monitor came today. I can go back to my own crib! My mommy and daddy will sleep more peacefully now. Thank you Danny Did! – Asher (with help from his parents)
From Carrie, Plattsburgh, NY
I can not tell you how much it means to me that you are giving us this gift. I worry constantly and with her seizures mostly happening at night, that leaves me up most of the time and setting my alarm to wake up to check on her. Now Cali can sleep in her own big girl room and I will be able to sleep with ease. I can never ever thank you enough. I also want to thank you so much for all you do for Epilepsy Awareness. It always frustrates me how little knowledge there about the struggles of families facing Epilepsy. I had heard of this monitor before, but never imagined how I could ever afford to get one. I cried when my mother told me. You and your foundation have made this the most amazing Christmas we could ever have.
From Joanne, Chicago, IL
We received the Smart Watch yesterday! I cannot begin to express my deep appreciation for this wonderful technology and the foundations part in bringing it to us. Though of course we all hope the watch never sends out that signal, it will bring me incredible peace of mind when I am a away from her and I believe is going to give her a feeling of some additional safety in her independence. A very special thank you. Your generosity is heartwarming.
From Silvina, Montevideo, Uruguay
Thanks to your advice, my husband and I can sleep at night. After two seizures during sleep, at least two that we know of, we didn’t dare to leave our son sleep by himself. We live in South America and EMFIT is not known here, we can now sleep quiet at night. Thank you very much for the job you do, your help goes further that you can imagine.
From Tammy, Michigan
Danny’s story touched a worried part of me. My son has had seizures for most of his life. One night I woke up to him turning blue and stiff. I thought I was to late. I have asked, several times since then if I could lose him and they tell me no, it’s not likely. They weren’t with me when I picked him up knowing he wasn’t there and the pain that tore through me. Or the worried joy I felt when I heard him breathe again. Thank you for fighting for kids like mine. Danny is still making a mark on the world.
From Jill, Orange County, CA
I would like to thank the Danny Did Foundation team for participating in our Second Annual Epilepsy Resource Fair. We really appreciate your taking time to host a table and provide vital information to the many people with epilepsy in attendance. You displayed a wonderful table of information and products related to seizure safety and SUDEP. This information is so important to people with epilepsy, and yet so infrequently addressed by neurologists and physicians. Your presence at the Fair was very important and a definite enhancement to the event. Our thanks to all the founders, staff and volunteers of the Danny Did Foundation for the wonderful life-saving work you do.
From the Burrows Family, Woodbridge, VA
Our son is a four year old boy who, despite having a complicated medical history, remains sweet and smiling. He has autism, and a connective tissue disorder called Ehlers-Danlos Syndrome. Words can not express how grateful our family is to be receiving this monitor. It is an unbelievable gift that eases our minds and warms our hearts. We pray that one day, no family will ever have to endure the loss of a loved one due to seizures.
From the Oswald Family, Chicago, IL
Words cannot express our sincerest gratitude to you for the incredible way you presented the epilepsy information to Bella’s classmates. Thank you from the bottom of our hearts for communicating all the necessary information with kindness and understanding. I was very touched by Bella’s classmates true compassion. We will forever keep you and Danny’s family in our prayers. We will ALWAYS remember Danny.
From Brian, Chicago, IL
It is amazing the impact this little boy has had on the world. In his short life he has inspired so many to act, to help and to selflessly put other people first. Personally, he has opened my eyes to all that is good in the world. I tell my kids how much I love them, I tell each and every one of my friends how important they are to me and I approach every day with optimism. There is no obstacle that can not be overcome with a positive thought and a helping hand. I am a 51 year old man and my life has taken on a new purpose and a renewed passion. All because I became sick and learned of an amazing organization that has transformed a tragedy into tremendous acts of charity, hope and support. I pray for him every time I am in church and I am truly inspired by your family and your organization. I am a better man because of a little boy I never met.
From Tracy, Kentucky
It still makes me mad that I had to learn of SUDEP when we almost lost our baby girl. I even told the neuro, I was angry they never mentioned it to us. He said he understood, but… I didn’t even listen after the but because there shouldn’t even be a but. They need to mention it no matter what when they discuss epilepsy & seizures. If we had known before hand about it, we would have never taken a baby monitor out of our daughters room. We have a seizure monitor on her bed & a baby monitor in her room now. All because I first heard of SUDEP from the Danny Did foundation after her nocturnal seizure. Thank you for informing parents like me of it and still so sorry for the loss of Danny.
From Taryn, Colorado Springs, CO
I’ve been sending everyone I can your way, and sharing how Ethan’s monitor has changed our lives, and most likely saved his! He’s 6 weeks seizure free since the surgery, and his and our lives have changed so much in this time. There’s no telling when or if the seizures will return, but we’re definitely enjoying this time! Thank you all so much for everything you do. You have changed the lives of so many of my friends!
From Krista, Rogers, Arkansas
I have a son who was diagnosed with benign rolandic epilepsy when he was 5. He is now 11 and we are on 2 different types of meds. His EEGs have shown some improvement but no one has told me why he has this (I have 5 other children that have no signs of it), and no one has told me that he could die from it. I want to say thank you for telling the world about your son and for spreading the word about this disorder.
From Kim and Gary, Durham, NC
We cannot thank you enough for your kindness, generosity and understanding through this difficult time. My husband and I are medical professionals, and we will continue to share the Danny Did message and mission throughout our community in Durham. He was truly a special boy with a very special family.
From Kathy, Telford, PA
We just set up our monitor yesterday. It was put to the test last night as our son had two tonic/clonic seizures…it’s amazing. I wasn’t sure it was working but yes it is! Thank you for this wonderful gift.
From Stephanie, Chicago, IL
Thank you again for the wonderful gift that a needy family like mine who could never afford. It is peace of mind. I just want the world to know how grateful me and my family are to the Danny Did Foundation. Love always, Travis, his mom Stephanie and family.
From Tom, Massapequa, New York
I just wanted to say thank you for all that you do. My son is 7 years old and just recently spent three weeks in the hospital with uncontrolled seizures. I had happened upon your site when researching SUDEP. No coincidences, I then contacted Emfit and received our first monitor within the last few months. That monitor saved his life on July 4th at 1 am when it alarmed and we found him turning blue after a grand mal. I just purchased another monitor this week being that he still makes his way into our bed often and he is left in the bed in the morning by himself…there is no comfort in leaving him alone with a monitor. Again, I thank you for all that you continue to do and I am forever grateful for finding the Danny Did Foundation.
From Karla, DeRidder, LA
Just wanted to let y’all know once again we are eternally grateful to the Danny Did Foundation and their sponsors also the Emfit Company! Jake stopped breathing not once but twice last night and without the Emfit monitor we would have not known. We got to him in time both times to get him awake and breathing again! Thank you , we love y’all! Jake will stand and testify one day about Epilepsy and I promise Danny and The Danny Did Foundation will be part of his testimony!
From Doug, Farmingville, NY
My thanks that you are working to educate the world about SUDEP. No matter what, please do not stop what you do.
From Taryn, Colorado Springs, CO
Thanks to you I was able to catch a very rare nocturnal tonic seizure my son had early this morning. He was face down in his bed when I found him after his Emfit monitor went off. His seizures are very long and don’t stop. He could have been just fine, but you never know. Thanks to your generosity I don’t have to worry so much about the what if’s!
From Chris, Richmond, VA
We can’t thank you and your organization enough for helping us with the Emfit Monitor. Me and my wife are already sleeping better and have less anxiety at nap time since we have got the movement monitor. Thank you again!
From Stephanie, Tomball, Texas
I want to thank you from the bottom of my heart for getting the monitor for my granddaughter. It will give some needed relief to my daughter-in-law and son knowing that Kaylee will have an extra protection at night and while sleeping. You and your foundation do great work in bringing these monitors to children whose parents go through so much on a daily basis. I want to try to do several fundraiser’s to help Danny Did in the future. I volunteer with several large organizations that gives me different opportunities to get the Danny Did foundation’s message out in our area, and possibly find some new supporters in Texas.
From Tom, Naperville, Illinois
The Danny Did Foundation has really come a long way. You are doing a phenomenal job in raising SUDEP awareness and helping families. As parents of two boys with epilepsy, there is nothing more important to us than finding ways to keep our boys safe. It’s something we deal with everyday and that is why we became involved with the Foundation. We need to find more support, funding, research and commitment to find solutions. I know the momentum you are building will continue to grow. and for this we are so thankful!
From Kristie, Indian Springs, Alabama
Your foundation has helped us in a way no other has ever done, and for this we are so thankful! Helping us with a monitor is huge for our family and gives us an element of peace in our hearts and minds, especially during the night. That is something we have not known for a very long time. Thank you for all you have done to turn a terrible tragedy into something so beautiful and lasting and encouraging to so many people. Precious Danny you will never be forgotten. You will always be remembered in love.
From Sonya and Gary, San Diego, California
Thank for your willingness to help our family. We can’t tell you how appreciative we are that you are willing to help us try to keep our daughter safe. In times like these, it’s nice to know that there are people out there that understand what you are going through and are willing to help.
From Jenny, Union, Missouri
I wanted to let you know that we received the monitor and we love it. Breanna slept in her bed for the first time in two months, and it is such a relief knowing that we will be awakened if she is in any trouble. We say thank you again!
From Michelle, Naperville, IL
Thank you Danny Did! After over 5 years of sleeping next to my son, he now, for the first time, has his own room and bed. We can’t thank you enough for helping us get a movement monitor!
From Renee, Ontario, Canada
I wanted to let you know that my daughter’s movement monitor went off an hour ago and woke me up. This time I really do wonder if it saved her life because she had turned and had her face pressed up against her pillow when I found her. Had I not heard the alarm on her monitor I honestly can’t say what would have happened, because her seizure continued on for a few minutes more after I moved her face away to clear her airway. My heart is still racing. Thank you Danny Did Foundation.
From Cassy, Dover, Arkansas
Dear Danny Did Foundation: My name is Cassy. I am 9 years-old and I want to thank you for your help. I wanted to send you the speech that I read to my class: “I have something that I want to tell you all. I have seizures. When I had my first one I was afraid. But my family was there for me and called 9-1-1. Afterwards my mom was on the Internet and found the Danny Did Foundation. After she watched the videos she let me me watch some of them. They helped me to understand a lot. I have been through a lot in my life. I had to have a device put in my heart about two years ago and I have had a tooth pick removed from my leg. The things that I have been through have made me strong and able to tell you all and other kids this. There is someone looking out for me because I believe I am here to send a message to kids. The message is that just because someone has a seizure does not mean they that they do not have feelings. If you see someone having a seizure you should help them. They will need really good friends to talk to about this. All you would have to do is listen and let them get it off their chest. Do not make fun of them. If it was you, you would not want them making fun of you. There are over 3 million people in the U.S. that have seizures and 50 million worldwide. It has been hard for me to talk about this with you. But there are other kids in the school that have seizures. So please be kind to all people. Think of it like this, people who have seizures are caterpillars just like you, and they will one day turn into a very pretty butterfly just like you. Your friend. – Cassy
From Carri, Scranton, Arkansas
We prayed this morning as a family that God would bless the day. It’s our daughter Keeley’s 16th birthday and we wanted her to have a good day. Wow! She has had a wonderful day and things keep getting better. I just got a call from the Danny Did Foundation and they are buying us an Emfit bed alert monitor for Keeley! This will be life changing for our family. Keeley can sleep in her own bed again, Dad can get out of the Pink bedroom (Keeley’s), and I will have great peace of mind knowing that an alarm will sound in my room if Keeley has a seizure.
From Lorena, Hebron, Indiana
Thank you again so much for getting our son a movement monitor and for letting me know about SUDEP. I really appreciate the information and did more research after talking with you. I read about the risk factors for SUDEP and learned that my son is potentially at higher risk. I am so glad that you brought this to my attention as this is something his neurologist has never brought up or discussed with me.
From Tracy, Chicago, Illinois
I’m amazed at how easy the Emfit monitor was to set up. It’s nice because when my son spends a night away with family, I can send it with him so he’s always monitored. That for me is a great plus. Every time I turn on the monitor, I think of Danny and his family. I am forever grateful.
From Mollie, Stevenson, Alabama
I just wanted to you to know that this monitor has been a true blessing to my family and me. I feel like it will give me peace of mind that I haven’t had in what feels like forever. No words can describe our appreciation, but as soon as we are able, we will begin planning a fundraiser to show our support.
From Alicia, Monroe, MI
During our Bake For Danny bake sale we had the opportunity to share your seizure safety brochures with about 50 people. People were pleased to learn that the Danny Did Foundation not only raises awareness, but has also put so many movement monitors in the hands of families that need them. The monitor has helped our family in so many ways and has given me some much needed rest. Before the monitor, I was afraid of sleeping because I didn’t want my daughter to need me and I wouldn’t hear her. After the monitor, I have assurance that if she has a severe seizure I will in fact hear the alarm. I thank everyone at the foundation for all of their hard work and their commitment to raising awareness and to the placement of these monitors. Merry Christmas!
From Lisa, Oak Lawn, IL
We have received our Emfit Monitor and last night, for the first time in almost 3 months, our son Michael was able to sleep in his own bed by himself. The last few months have been stressful and I finally feel that we are on the right track. I also want to thank you for taking the time to talk to me about doctors who specialize in epilepsy. We have met with Dr. Asconope from Loyola and are very happy with the direction he wants to take things. Without your advice I do not believe we would be in the place we are now. The Danny Did Foundation has educated me more than any other resource I have found. I am profoundly sorry for the loss that you and your family have experienced. Every night, when I look into Michael’s eyes and say “goodnight” to him I think of Danny. I know he is saving lives and giving families the strength and knowledge to move forward when living a life with epilepsy. Thank you again.
From Adrienne, British Columbia, Canada
I really could not even express my gratitude to your foundation today. I did not even realize how much I was holding in until you offered me the movement monitor today, and that was when all my emotions came to the surface. I feel that I was blessed today, and maybe you gave my son a chance that he may not have had. It is people and foundations like you all that make the planet a better place. To take care of our fellow humans, is the epitome in living. Please let me know how I can help your foundation up here in Canada.
From Julie, Illinois
I have shared, and will continue to share, with people everywhere, the goodness and education that Danny Did Foundation spreads every day. Danny Stanton lives on through your loving actions. You have single-handedly raised sudep awareness and surely have saved countless lives because of this awareness and promotion of the Emfit monitor! Perhaps even my own son’s life has been saved, as I am alerted to nighttime seizures. This is personal. This is profound. This is love. FOREVER INDEBTED.
From Jill, Massachusetts
I’m sure you receive so many stories but I was so touched reading about your experience and all that Danny did, I feel compelled to share. In September of 2009 our then 2 yer-old daughter collapsed on the stairs. She wasn’t breathing and it looked like she had fainted. We called 911 and went to the hospital. We were told that she hyperventilated.
Upon following up with our pediatrician we saw a neurologist. She did not order tests rather sent us on our way with a pat on the head and an assurance that it wasn’t a seizure. 2 more episodes later I dissolved into tears on the phone with our pediatrician. As I described what happened she insisted that they did sound like seizures and again we went to the emergency room. Our daughter had her first grand mal seizure in the waiting area of the ER. She was admitted, began medication and was sent home. She had reasonable seizure control for several months and then in Feb 2010 her seizure activity increased and we noticed more activity in and around her sleep cycle.
Our daughter, now 4, continues to have multiple seizures/week with almost all happening in her sleep. She has been on 10 medications and is currently on 4 plus diet therapy. If I sleep with her it disrupts her sleep cycle and causes more seizures. If I don’t sleep with her I only doze, afraid of missing a seizure.
Only when stumbling upon your foundation website and your story was I able to summon the outrage that this Emfit technology exists and we were never told. I believe that doctors should present all available options, not just the ones that earn them vacations from pharmaceutical companies.
My heart aches for you, knowing Danny’s passing happened much too soon. I hope someday after my daughter has led a long and happy life, that she is able to meet Danny in heaven and say you saved my life. Thank you for your story and for sharing your pain.
From Joe and Andrea, Texas
Thank you to Danny, the Stanton Family, and everyone that makes the Danny Did Foundation possible. My wife and I cannot explain the relief we feel knowing there is a place to turn for answers as well as support during these trying times. Based on the reviews of the EMFIT, I just know it will make our lives much less stressful during the night.
From Julie, Illinois
I have been reading about Danny and want to tell you what a beautiful boy Danny is! I know he is alive in your heart, his spirit lives on because of the wonderful things you are doing in his name for people with epilepsy. Thank you. Because of the Danny Did Foundation and your spreading of awareness of SUDEP and the Emfit seizure monitor, we have been able to get an EMFIT monitor for our son Jimmy’s bed. The wonderful folks there offered us a $50 per month payment plan, God Bless them! The monitor has already caught 3 night time seizures that I did not know were happening. I am so profoundly grateful for the tireless efforts of the entire Stanton Family and friends in raising awareness of SUDEP and all the things you do to prevent SUDEP it in another person.
From Kari, Minnesota
I truly believe that without the Stanton’s the awareness of SUDEP would still be in the infancy stage. Ony two years ago when I was researching, I could not find any news on SUDEP. How sad that we have to lose someone we love to get to this point.
From Gina, Illinois
I just want to express to both you and your wife, that your unconditional love and devotion to your son and this foundation is truly amazing and awe inspiring! Your relentless fight and determination to help so many patients and their families is such a gift. I don’t know if you realize the impact that you are having on so many people. Both of you make others want to be better people for their own family and friends. Sadly, most people do not take the time to see all the tragedies and miracles that are happening all around us every single day. Moreover, all of us tend to get wrapped up in our daily struggles and tasks and we don’t stop to notice the important things until a situation or circumstance forces us to make some changes. I believe with my whole heart and soul that Danny is with all of you every step of the way and is so very proud and homered to know that you are his parents! Even though Danny’s time on earth was way too short, his spirit and legacy will continue to live on and impact so many people for many years to come.
From Jenni, Shelbyville, TX
Danny Did . . . educate and promote the awareness I needed for my son Austin. Thanks to you, we recieved and used the EMFIT last night and it alarmed me early this morning of a seizure. What an inspiration Danny was, is, and will continue to be…THANK YOU! Lives are being saved and changed. What a blessing your Danny is to us.
From the Nash Family, Illinois
We can’t thank you enough for all your generosity. We will always be thankful for everything that you have done to help our family. Caleb went to the hospital this weekend because he went into Status Epilepticus and in our dealings with the hospitals we are determined to make others SUDEP and epilepsy aware. We were shocked at how unfamiliar people are in their dealings with epilepsy. Please let us know how we can help spread the word. We feel as though everyone living with epilepsy needs to have a monitor and that everyone should be aware of how serious epilepsy really is. We want to help any way we can.
From Patricia, New York
Once again, I want to thank you for helping us keep our son safe at night while he sleeps! Since our son too only has had seizures during sleep, this monitor allows us to monitor him during sleep and he feels more secure too! Let’s hope in the near future a cure is found for epilepsy, but for now, there are tools out there to protect our loved ones. Thank you again to the Stantons!!! You are truly remarkable individuals!!!!!
From Angie, Michigan
I wish to take this time to let you know how much I appreciate your purchasing this monitor for my daughter. I can now allow my daughter to sleep in her bed and I will be able to sleep better, knowing that the monitor will alarm if needed. I have posted about your organization on my Facebook and my sister has agreed to put a link on her web site. Again, Thank You So Much for all you do!
From Kiara, Oregon
Thank you for having such a beautiful son! It breaks my heart to know that the world did not get to know Danny longer than his 4 years. Your story has touched a cord with me on many levels. One because I am a mother of a four-year old boy who has nocturnal seizures. My husband or myself have been sleeping at night with our son in his twin bed for over a year. We are afraid that if we leave his side we will not be there during a seizure. I have always taken his epilepsy very seriously, but never, ever has his doctor discussed with me the idea that his seizure could lead to death. Now I know better. You are driving home points that I am becoming very aware of. Healthcare providers don’t talk about SUDEP and they should! The other issue I am so thankful to learn about from your website is about technologies and epilepsy. I just couldn’t believe there was nothing out there worthwhile to monitor my son’s seizures while he was sleeping. Seeing the link to the Emfit Monitor was so gratifying. You are amazing!
From Tara, Pennsylvania
I read your article on msnbc.com. My two year old child suffers from complex febrile seizures and has had several in her sleep. I am looking into the Emfit monitor device after reading your article. Thank you so much and my heart aches for your loss. Your son’s life is an inspiration to me and my family as I had know idea a device like this existed. You are helping so many with you work and I thank you!
From Michelle, Pennsylvania
I read your article in our local paper yesterday and couldn’t wait to tell my daughter about it. My 3 year old grandson has suffered from seizures since he was 6 months old and each time was sent home with the “I don’t know” diagnosis. Finally, last year right before Christmas my daughter insisted the doctors admit him to the hospital because he was having up to 8 grand mal seizures a day. They diagnosed him with epilepsy and he’s been taking Kepra and has been seizure free since. I worry daily about him as they did find in the hospital that he was having seizures in his sleep. His neurologists have assured my daughter that he will never die from this! How can they make that assumption?? Thank you so much for giving us knowledge and for keeping the fight. I ordered four DDF shirts last night and can’t wait to wear them proudly for Danny!
From Ginny, Texas
I just found your link. I am so sorry for the loss of your son. I have lived with epilepsy since I was six months old. To this day, I am amazed that doctors do not tell patients that seizures can and do cause death. I have met other epileptics that did not even know that fact. I am deeply saddened that it takes a tragedy like yours to bring this to light.
From MaryEllen, Illinois
Thank you for all your work to get this important information out. I read the article on Sunday, and yesterday my two year old niece in Wisconsin had 8 seizures and stopped breathing in the ambulance. My family has your info now and my neice is definitely safer for it. No telling how many lives you’ve saved already. Bless you.
From Denise, Louisiana
The seizure alarm came Monday and we set it up and tested it. We had to set it to make it less sensitive, from 3 to 2 as it thought that he was in the bed when he was not, heavy mattress I think. On the first night it went off twice, once for a seizure and once because he got out the bed in his sleep. Last night it went off once because he had moved all the way to the side of the bed against the wall and it did not sense he was still in the bed. What a tremendous relief to know that I will be alerted even when he is out of the bed and/or not in range. I cannot thank Danny Did enough for this wonderful gift. My son is so happy to be in his bed again and the baby & I are happy to not have to sleep on the sofa bed. Danny Did help our family in so many ways, Danny Did help my son sleep in his own bed, Danny Did teach us so much about Epilepsy and SUDEP… Danny Did make a big difference in our lives… Thank you Danny!
From Michelle, North Carolina
I am so blessed to have been in contact with the Danny Did Foundation. This Christmas we are blessed to be recieving our Emfit for my son. Danny Did so much and continues to do so. Danny Did and will continue to give my son and many others a chance at a normal childhood. May God Bless all of you!!!!!!
From Jen, Florida
I am so proud of your family! I am the mother of a cardiac baby who is now 16. First, people have no idea how lucky they are to have a healthy baby, and second, you are bringing awareness to so many people and education is EVERYTHING. I cried whenI read about what happened to Danny, it brought back my daughter’s experience along with all the other babies that were sooo sick. We are in Florida but if there is anything we can do to spread the word please, please let me know and consider it done! Love to all of Danny’s family!
From Kathy, California
I just wanted to let you know that both of you and Danny are truly heroes!! Your story is so inspiring, you have taken a horrifically tragic situation and used it to raise awareness and empower other parents. Because of you, my beautiful 8 year old niece has an Emfit, and for that I am eternally grateful. You have changed her life, and have given a measure of peace to her parents and loved ones. God Bless you, I know you are approaching the anniversary of the day you lost Danny, and I know it will be a difficult time, but it is sooo amazing to me that in such a short time, you have impacted so many lives.
From Laura, Illinois
In the middle of a Christmas party, it occurred to me how very, very blessed I am and that others will have a much more difficult holiday season than I can imagine. It overwhelmed me with sorrow for their pain, and gratitude for my good fortune. So I promise to grab each day and live it, to grab my child and hug him, to grab ahold of life and enjoy it – because Danny Did – and so should we.
From Julie, Illinois
The lasts 2 months have been filled with lots of doctor appointments and tests for our oldest son. Yesterday, we had an EKG (his first) and a high-level MRI. As I sat in the sub-basement at Children’s waiting for our son to wake from the anesthesia, I overheard a nurse talking to another little boy in the bed next to my son. She said “Daniel, what do you prefer to be called … Daniel or Dan?” He replied, “Danny!” When we were leaving, I pulled back our curtain and there sat Danny, a kindergartner with blonde hair and blue eyes. It’s moments like these that I feel we have a special friend to lift us up when we are going through difficult times.
From Katie, Illinois
We have been at Children’s for a few days with our little boy battling really bad seizures. At this point, they are under control. Things are really up in the air in terms of what has caused the seizures and what our future holds- but epilepsy is our official diagnosis.
I just wanted you to know that the very first place I turned was The Danny Did Foundation. It is all I know about epilespy. I have studied the site and have found comfort in the resources your family is working so hard to provide. I know it is just the beginning for our family and our son’s battle- but we want you to know that we are so thankful for the information.
Danny Did help me get through the first few hours of a diagnosis no Mommy ever wants to hear!
From Ceci, Indiana
Well done! I just donated to Danny Did, made a link on my FB status, and sent an email to about 25 friends and family. You guys are an inspiration! Thanks for all you do for kids like my little daughter who have epilepsy.
From Laura, Illinois
There’s a large hispanic population where I work so we’re honoring “Día de los Inocentes” with prayer and feasting. There are a LOT of people talking about Danny and SUDEP in these halls today. Just in time for Epilepsy Awareness month. Danny Does teach others every day.
From Leah, Calgary, AB
Your story brings tears to my eyes as we have been navigating clustered, tonic-clonic seizures with our 7 yr old for the past year. Several of her worst events have been while falling asleep or waking up and with her history, she is at risk for status seizures. Thank you from the bottom of my heart for everything you have done to bring awareness to SUDEP. I learned about it on the DannyDid website and I ordered my Emfit monitor two weeks later. I hope to pioneer for the monitor in Canada and get it approved by health care insurance companies here to make it attainable for anybody with a loved one suffering with epilepsy. You are a blessing and inspiration to all of us parents navigating this world of seizures.
From Rebecca, Illinois
I think what your doing is wonderful. My son had his first seizure on Thursday, Sept. 2. It was the scariest day of my life. He had his second seizure that same day. I work with Danny’s Aunt Katie and if it was not for Danny I would not know about the Emfit movement monitor. I just ordered it today. Maybe it can give our family some piece of mind while our son sleeps. Thank you and God bless.
From Blanca, Nevada
Why?Why? I just found your site! So sorry for your loss. I have been researching ways of helping my family. My son has Dandy Walker. The seizures come on often and of course unexpected. He started having them when he turned two and now that he is turning four we thought it was time to finally let him sleep in his own room. Of course on Saturday he had a gran mal in his sleep. Something woke me up and if I hadn’t who knows what would have happend. Why do doctors not worn us? Why do they tell us nothing can happen?
From Diane, Skelmersdale, England
I have just read Danny’s story and my heart goes out to his family. I lost my 35yr old son in July to SUDEP. His seziures were few and far between but it only takes that last one. All seiziure sufferers should be made aware of the risk so they can put steps in place to prevent death.
From Meghann, North Carolina
Went to the pediatrician today. The doc noticed my bracelet and the one I put on the baby’s car seat (I figure when people stop to see the new baby, they will see Danny too : )) The doctor had never heard of the monitor and was very impressed when I told her where it was being tested. She wrote it all down (the foundation name/site and the Emfit) in my son’s chart! Our Duke appt is on Monday and we will talk about you guys there too : ) We love what you guys are doing! Keep it up Danny! ♥
From Anita, Oregon
Danny Did reach all the way to Oregon today to help a little girl and her Mom and Dad. Your mission is real and palpable, thank you for helping!
From Rachel, South Carolina
I wanted to send you a little update on how my son has been doing with his Emfit monitor that you sent us from Danny Did! It’s been so great! It really has changed our world in just over the past month! The first night that we got it and we told our son he would be able to sleep in his own bed again, the relief and happiness on his face was priceless! It has been working for us…there have been a few nights now that the monitor has alerted us to Caleb seizing. At first, I was so nervous and so anxious of it maybe not working or something. It really was like when he was a newborn and the first night of putting him in his own room all over again. I have to admit, I didn’t get much sleep the first week but after the first time that it showed me it does work and we can rely on it to alert us…we’ve all been sleeping a lot better. He has been much happier and my husband and I are happy to have our room back to ourselves again! [:)] It’s a big comfort to know he can feel like a normal kid again but still be safe. So thank you again, from the bottom of our hearts! We really do appreciate this so very much! Danny is always in our hearts! I’ll always think of Danny as my little boy’s guardian angel! [:)]
I recently was helping a mum whose daughter was just diagnosed with epilepsy. She went from having no seizures to 60+ a day. Her mum was unable to sleep – too afraid of what could happen to her daughter–and as president of a company she did not know what to do. I immediately thought of the Emfit alarm I first saw on your website. I sent her the link and she purchased one right away. So far, so good! I truly thank you and everyone at the Danny Did Foundation for all your hard work and advocacy. Without you, I know many people would not be able to sleep at night.
From Melissa, California
Just wanted to say thanks for your hard work. Found your ad on Facebook. My 3yr old daughter was diagnosed with Myoclonic Seizures March 18th, 2009, and her seizures are still uncontrolled. Her new doctors at UCLA think she was misdiagnosed. Your website is very interesting for me as my daughter never sleeps through the night. We are scheduled for our 1st multi day video EEG on July 8th. They have told us she will be attached to the EEG and video taped for a minimum of 24hrs (sleeping & active), and a maximum of four days. I’m very nervous but hopeful to have answers. With her not sleeping through the night, neither she nor I have slept in three years (ok 2 x’s she slept through the night, but mommy didn’t). Again thank you ALL for your work, help, and awareness!
From Gigi and Mike, Illinois
Thank you for your website, we have found your information regarding epilepsy and SUDEP quite helpful. We have a 10 year old daughter who was diagnosed with Rolandic Benign Seizure disorder 2 years ago (Seizures that occur as she is falling asleep). We have visited your website several times, it was the first one we went to after her last seizure.
We have taken some of your suggestions and incorporated them into monitoring her sleep. We have learned quite a bit from your website that we didn’t hear (or maybe don’t remember hearing) from the “Experts.”
You could have let someone else step up to the plate when it came to educating the world regarding epilepsy. Thank you for educating us.x
From Meghann, North Carolina
What an amazing foundation you have built in memory of your beautiful son. Our son, who just turned four on Monday, had his first seizure on the 2nd of this month. It lasted two and a half hours and we spent two days in the PICU with him. Reading Danny’s story hit close to home. Our son has been in our bed since and I don’t see him leaving anytime soon, even with a baby due in but 2.5 weeks. I am so glad we found your organization. It reassures me that we are not going through this alone.
From Rachel, South Carolina
I have a 3 year son who has severe epilepsy! Many of his seizures happen at night time. We didn’t even become aware of this until after I read Danny’s story. Even with a child with Epilepsy, he was just very recently diagnosed and everything is still very new to me. But Danny was the one that educated me on the risk of SUDEP. The same week I read about Danny and his touching story, my son had a major seizure while in his room as he was asleep. I found him pale faced and with his lips completely blue. Thankfully, I got to him in time to turn him on his side so he could recover and everything turned out okay. So Danny’s story really hit me deeply. The next night, we brought our son into our bedroom with us to watch him ourselves. We then discovered he was having many more seizures than we originally thought. He wasn’t just having seizures in the day time but at night while he was in his bed, asleep, and alone! That thought not only scared me but broke my heart to think he was going through that by himself and we never even knew of it occurring! Since then, he has moved into our room.
Thank you for all that you do for families. Danny has stayed in our prayers and has become a big piece of our hearts. So thank you again for sharing him with us because without Danny’s story…it may have taken us longer to find out about our son’s seizure activity at night and about the risk of SUDEP!
From Julie, Illinois
We just submitted a letter of medical necessity (for an Emfit Movement Monitor) from our neurologist to Blue Cross Blue Shield of IL. A representative said she would put a rush on the approval so we hope to hear within a few days rather than a few weeks. I will let you know what we hear back from the insurance company. We did contact Emfit USA regarding some needed codes for the insurance company … response from them was super fast!
Our son had surgery last week for his second set of ear tubes and adenoids removed. Such a common procedure for many kids … for our son it meant one less reason to have a nocturnal seizure. An ear infection is what we believe caused his two most recent nocturnal seizures.
We know that this is not the only cause of his seizures, so we keep on pushing. Your journal entries are a source of inspiration for our family. We keep the article from Chicago Parent’s Magazine in our son’s medical binder. Every time I make a call to a doctor or write a medical note, I see Danny’s story. It reminds me to go that extra step. We appreciate your family’s efforts. We hope we can be a part of it to give back a little of what Danny has given to us. The accomplishments the DDF has made so far are amazing! You are making a huge difference
From Kathy, Queensland, Australia
This is an incredible story. I lost my son December 23, 2005. He was on working holiday in Canada from Australia. We had to fly to Canada to turn the life machine off, then bring him home. It was the worst day of our life. He was 32 and was so lucky to enjoy life and travel the world, where such a young child like Danny must of been so hard as he was just enjoying life. My heart goes out to the family. We also did not know much about epilepsy until it was too late, so to have people like this who lose a family member and then to want to help prevent this from happening to others is so great. Keep up the great work, as I know, like my son, little Danny would be so proud of his mum and dad. God bless you all.
From Kristen, Colorado
WOW…I just found this site through our local Epilepsy Foundation page and it is overwhelming. As a mom of a 9 year old who has had seizures since he was 3 months I am shocked and angered at the neurologists who have kept this information from us. I specifically remember our first neurologist telling us that “a seizure won’t kill him…” God bless you and your family in your quest to make SUDEP known to the community. I pray that your work will bring you peace in the months and years ahead. Thank you!
From Julie, Illinois
I heard about Danny a few months ago but only learned more about you and the the Danny Did Foundation this week. I have two little boys with seizure disorders so your story is very close to my heart. I went to Dannydid.org and learned about Danny and his parents’ tremendous efforts to educate others of the risks of seizures and preventable measures. It is true most doctors don’t talk to parents about the risk of death or how we can monitor our children to prevent death.
Last Thursday night, we put the boys to bed as normal. About 1:30am I heard my son whimper softly. I was hoping he would fall back asleep. I was tired and didn’t want to get out of bed but Danny’s smiling face convinced me to go check on him. Long story short, a few minutes later he was having a grand mal seizure. We were able to administer emergency medication prior to the ambulance arriving. He was taken to Children’s Memorial hospital and released a few hours later.
Needless to say, we are taking a much more proactive approach to managing our children’s seizures. We are asking our doctors the tough questions and will continue to push them. Keep spreading the word … it does matter!
From Becky, Vermont
My 93 year-old dad read about Danny in the Portland (Maine) Press Herald. It moved him so much that he passed the article on to me. Danny’s story moved me too—so much so that after reading the story, I folded it up and put it in my purse. I just couldn’t put it in the recycle bin!
I was just searching in my purse for a phone number and saw the folded newsprint. I took the story out and re-read it and suddenly the frustrations of the day vanished. I’ll bet I’m not the only one out there who never met Danny or your family, but has been changed by his story. I just wanted you to know that Danny’s spirit lives on! God bless you.
From Ellen, South Carolina
It’s difficult to know where to begin an email like this, but I know without a doubt that it is one I must send.
I won’t take up all of your time with our story. Simply put, after our second son was diagnosed at 3 months old with a brain malformation and accompanying seizure disorder we began our journey down a road that was completely unexpected. Along this journey we have realized how little is truly known about Epilepsy, how little is said about Epilepsy, how neurologists in all of their valuable knowledge rarely are able to address the human aspect of the disease and how at the end of the day our goals are all the same – to minimize and hopefully eliminate the suffering this brings to our little ones and everyone else involved.
Our son has been basically sleeping with us or in the room with us since he was born, which was April of 2009. In the beginning it was the newborn feeding schedule, however after the diagnosis our world simply changed. At just over 10 months old, it is time for him to sleep in his own room and for our family to keep heading towards some form of normal – but how in the world would I ever make that happen. I was sent to the Emfit website by a friend and spoke with Christine there this morning. We talked about the Movement Monitor and she also mentioned your foundation…life then took an interesting turn.
As I read through your foundation’s website, joined as a fan on your facebook page and let the reality of your story sink in I was overwhelmed, excited, heartbroken for you all and blessed to know what an inspiration your sweet son has been and will continue to be to so many people.
After battling multiple medications, with little success, I had such a strong feeling of wanting to create some sort of foundation to honor our son, our family’s journey, everyone who battles this horrible disease, but also to help raise awareness and one day contribute to finding a cure. I had in my heart and my soul what that looked like, felt like – but I had not yet translated it to any tangible form. And then I was sent to the Danny Did Foundation website…and there it was. You have captured a love and compassion, a mission and a purpose and a sheer determination to make a difference in the lives of everyone who suffers the effects of Epilepsy. I feel blessed to have found your site as a valuable resource and also as a place to hopefully channel our family’s strong need to make some sort of difference.
Thank you for sharing your family and precious Danny’s life with us. Please know that I realize how crazy this email may sound, since we don’t know each other at all, but I hope it will convey the simple feelings that I had after learning of your story.
May God bless you and your family.
From Michelle, Illinois
I am so sorry for your loss. I am a pediatric RN we are patients at Children’s Memorial Hospital. I’ve asked our doctor if there is any device for home use that alerts to seizure activity. She said there is not and that I should use a baby monitor, but as you know they really are not very loud during a seizure.
I have searched for a device and could only find things similar to apnea monitors for alarming when there isn’t enough activity. We need something for increased activity. I have a 17 month old daughter who also sleeps with me. She has never had a seizure before but instead of getting up to check on her a million times a night out of fear I feel better with her next to me. My son started seizing at 11 months after having a low grade temp and seized for over 12 minutes. He has had one that was 30 minutes as well. We have Diastat handy in every room. Thank God for that medicine at least. He then began having seizures this summer with no fever or any reason. He has had one abnormal EEG but numerous normal and two normal MRIs as well. He is on Topamax currently and the dose has doubled since he had another seizure on it in October. He is otherwise just like Danny, a perfect preschooler, happy, and energetic. Most people are in shock that he has seizures and almost don’t believe me since he looks just fine on the outside.
Thank you for your fight to find something to help children like ours. If there is anything I can do to help please let me know. I fully support your cause! Thank you and God bless you and your family.
From Jennifer, Illinois
I have tried to write you several times and I just can’t think of the words to say. I guess I will give it a shot.
First of all, I stumbled across your website Sunday morning by Googling ”monitors for children with night seizures”. I was instantly overwhelmed with emotions of every kind. We too have a son who has seizures when he sleeps. Only a parent in our situation can understand the fear every night when we put our child to sleep. I can only imagine what you have gone through with your loss of Danny. I commend you for what you are doing. I’m not sure I would have the strength.
Our sin was born at 36 weeks and weighed just over 5lbs. He seemed perfectly healthy other than his lungs: they were underdeveloped. He was in the NICU for 10 days. He is so special to us. Having all girls, a son was a welcomed change.
Our son had his first two seizures within 12 hours in August 2008 We didn’t realize his first episode was even a seizure until he had his second which was much worse. We had no idea what was happening to our son. Our neighbor, who is a nurse told us that was what it looked like to her. It was not what we thought was a “typical seizure”. It lasted for about 20 minutes and it seemed like an eternity for the ambulance to get to our house. The paramedics asked if he was poisoned or if he was diabetic. (Our daughter is so we tested his blood sugar, it was fine). Our son finally stared vomiting and became very agitated which was not like him at all. He was out of control by the time we got to the ER. They decided to keep him overnight because his seizure lasted so long as did his postdictal period. He had a CT scan and a sleep deprived EEG and later an MRI. He was sent home and we were told to make an appointment with a pediatric neurologist.
Within a week we were at the hospital. After a brief examination and an unsuccessful attempt at reading the cd that was sent of his EEG, the doctor simply said, “your son has epilepsy” and gave me a folder with some pamphlets and outdated calenders with the name Keppra on it. He said he will be on Keppra for two years and we will see you back in 3 months.
We gave him the medicine and took him back two times. It seemed like such a joke and the doctor laughed when I asked questions. It was like a seizure disorder was a cold to him.
We had switched insurance carriers and were able to go to a new hospital. I called and made an appointment there as soon as possible. Again, I don’t know if it is just me but the dcotor was just so matter of fact and not very interested in answering questions. I left feeling very frustrated.
Until I read Danny’s story I didn’t realize I was in denial. It never dawned on me that we could possibly lose Jonah. I know now I need to follow through until I feel comfortable with his care. What you are
doing is working!!!
Thank you and God Bless you and your family.
From Donna, Illinois
I received a frantic phone call from my mother, “I think something is wrong with Jake!” she yelled. My mother described pulling into the McDonald’s parking lot and looking back to see Jake’s excitement — and then seeing his head down, eyes open, mouth open, and hand twitching. She panicked and yelled his name. The episode lasted at least 30 seconds. A few minutes later, it happened again. She then started toward my house. I was already in route home from work and on the phone with the doctor. Jake was to come in right away, the doctor said. I called my husband to give him the news. I hoped that my mom was somehow wrong…then I saw it happen myself.
I am a special education teacher and have seen grand mal seizures —but when it is your child— there is no preparation for that. This one looked as though he was trying to fall asleep, until I saw his eyes open and his hand twitching. What surprised me was that he did not seem tired or scared when he came out of it 30 seconds later.
The doctor made a similar comment — but he saw our fear. He said if it had been just one seizure, we would have been advised only to watch, but since it was three seizures in less than an hour, he wanted Jake hospitalized and tested. The whole thing was awful! Jake had an IV, a Seizure Study (as demanded by our nurse!), and an EEG. None of these showed any seizure activity at the time — but they were brief tests. I am so grateful that nothing was found…but also scared. Jake has been seizure free for 14 months, as far as I know. The three that we know of were hard to spot — I really wonder how many he had before and has had since. I warn everyone who takes care of him about these.
Now, reading other information, I don’t understand if he had an absence seizure or another type of seizure because of the twitching hand? I also wake up several times a night to check on him. I worry that maybe he was falling asleep when he had these and that there is a sleep connection. So many questions! You would think that someone would have some answers to make our lives easier. Jake is a horrible sleeper and I really wonder if the seizures are the reason?
The Danny Did Foundation makes a difference in the lives of so many people. Thank you for your group and the opportunity to share — and to get to know your son through your eyes!
From Michelle, Maryland
I just sat to read my emails. I saw Danny’s story, clicked past it, read my emails and got up and started working again. Something told me to go back and read it and I am so glad that I did . . . I was meant to. First, my profound sympathy to your entire family. I have come to realize in my 45 short years, that none of us really knows what we have in store for our lives. We plan, we teach, we provide, we protect, we love, but for some things, we just don’t get to decide.
We don’t have to like it, we just learn to find a way to accept it. I have done the eulogies at five funerals including my best friend’s daughter who dropped dead from a heart issue at 19 and my mother who died at 69 after a three-week battle with cancer. At each of their funerals, I included a quote from Abraham Lincoln that was fitting for them and especially fitting for Danny: “In the end, it’s not the years in your life that count, it is the life in your years.”
Danny did. Danny truly lived his life . . . all four years, and he will continue to live on in the hearts of everyone who knew him . . . and even in the hearts of those he never met. Ours prayers are with you.
From Morgan, Illinois
I have a daughter who has been having seizures since one year of age. She was diagnosed with pediatric epilepsy when she was two yrs old, and although it has been a difficult road for all of our family, we are quite lucky that she has responded well to Depakote, which she has been on for almost six years. Finding the right medicine for young children was always so difficult — liquid Trileptal when she was an infant and then sprinkles that we would put on yogurt left her with stomach pain that would double her over without notice. We switched to Topomax to try and eliminate the pain, and after two doses she hallucinated for four days. Her name is Honor and she still remembers taking “bad medicine” Honor is turning 10 in a week. She has never had a seizure while on her meds.
I talked to her neurologist after learning about Danny and I was very surprised to learn about SUDEP (Sudden Unexplained Death in Epilepsy). We have been living with epilepsy for so many years, but didn’t know about this tragic possibility. Without the Danny Did Foundation we still wouldn’t know. That is what Danny Did for our family.