Stories Of Impact
Danny Stanton does continue to have an impact on this world long past his last breath. The Danny Did Foundation has received emails and letters from people around the world who have been affected by epilepsy. We share these messages to honor these families, and to let others know that you are not alone. We invite you to send your own story to info@dannydid.org.
Brown Family, Colorado
If something looks out of the ordinary or concerning, we can save a particular video movement clip and share it with his neurologist. It provides a window into our nightly routine for the doctors to “see” how our son typically sleeps in his home environment that they otherwise wouldn’t be able to understand without the help of this video monitor. We are glad this device has become a part of our “family”. And we are grateful that we all get better sleep and more peace of mind at night.
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.
Brannon Family, Texas
We want to express our sincerest thanks to you all for this opportunity. The SAMi device is the perfect fit for our lifestyle. As a caregiver – this device will help me ensure our son is safe when I am unable to sleep beside him during work hours. The threat of SUDEP is very real for everyone affected by epilepsy. This device will bring him an added sense of comfort and ease while he rests, which results in a better night’s sleep, which is vital for his health. Thank you for the work that you do in educating and supporting families like ours.
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.
Handmacher Family, Colorado
We applied for and received a grant for a SAMi monitor for our daughter about five years ago. At that time, I wasn’t getting more than three hours of sleep every night, and it made juggling all of Melody’s care, therapies, and appointments very difficult. Since we installed the SAMi, not only has it saved Melody’s life countless times by alerting us to her having a seizure so we can help her through it, it has given us peace of mind knowing we can sleep so we are prepared for every day. Danny lives on in the smiles of all of the kids that live their best life every day, despite seizures.
Hogan Family, Halifax, PA
Words cannot express our gratitude for the grant you’ve given us for a seizure monitor for our 2-year-old son. We appreciate your work, kindness, and dedication to other parents and children dealing with epilepsy. I’ve already had a discussion with our neurologist and nurse practitioner about the amazing work your foundation is doing and how seizure monitors can get kids back in their own beds safely. You have helped us feel less alone and the Emfit monitor will bring our entire family peace. Thank you for making such a huge impact for us and other families. Please know how grateful we are.
Murray Family, Hyannis, Massachusetts
This device has given us so much more peace of mind during the nighttime hours. Our daughter’s seizures are almost exclusively nocturnal, which makes her at higher risk for SUDEP. Since we received the monitor from Danny Did, we are all able to sleep better at night and feel like our daughter is safer in her own bed. I was previously using a blurry baby monitor and waking constantly any time I would hear noise on the monitor. The SAMi video quality is so much more clear, takes recordings of events, and does not have to have sound on all the time unless you want it to. What a beautiful tribute to Danny. We are so thankful for your help.
Elliott Family, Connecticut
Thank you again for helping us gain access to the SAMi monitor. In the short time we have had it up and running, it has already alerted me to seizures I would not have caught otherwise. I can’t tell you the peace of mind that this has given me! I am so grateful. This tired momma can finally sleep a little easier.
Krouskop Family, Lima, Ohio
Thank you so much for this grant and the chance to sleep with a little less worry! Our daughter’s diagnosis has just flipped our world on its head. We learn something new about epilepsy and Dravet Syndrome often, and we try to keep up on the new and upcoming changes in medicine and care, to help her have the best possible life she can.
Wadler Family, Dobbs Ferry, New York
Your grant is unbelievably generous. Especially during these difficult times during the COVID-19 crisis. We are very appreciative of the Danny Did Foundation. You have given us a sense of security like no other. Thank you!
Barb, Phoenix, Arizona
We almost lost our granddaughter with her first seizure. She seized for 45 minutes. After her diagnosis, she has had 3 small seizures. Her neurologist feels confident that we are on the right road with her meds. She is a beautiful, happy 4-year-old who hasn’t a clue that life isn’t everything but great. She knows she takes medicine twice a day and that’s about it. My husband and I have struggled, though. We each wake up about 4-6 times a night. It has definitely taken its toll. We are both exhausted much of the time. My husband, a brilliant mind, has trouble with his focus these days. We know it could be so much worse. But our granddaughter seizes with very little movement. We always worried that we will miss it. You were one of the earliest websites when we were trying to figure it all out. We are grateful.
Ann, West Chester, Pennsylvania
I want to thank Danny Did for my son’s Insypre smartwatch. It is such a relief to know he is okay when I can’t be with him. He feels much more confident knowing he will have someone to check on him if needed. It’s great having the GPS. He can now walk his dog where he wants without checking in with me. Today is his 54th birthday, and I no longer have to treat him like a child. I’m forever grateful.
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.
Neal Family, Ohio
I’m sure each new milestone brings mixed emotions given the tragedy that inspired all of your good work, but I have to believe Danny would have been proud of how many lives you’ve saved and families you’ve helped over these 10 years. I don’t know what we would have done without you, so thank you again for everything.
Cullen Family
Without this travel grant, we probably never would have put a foot on an airplane and had this incredible Disneyland conference experience with my family in a magical place. We have lived scared for so many years. The epilepsy expo was very informative. We appreciate you!
Vermillion Family, Tigard, Oregon
I was just reading about your son, Danny. Like you, our son, Daniel, was also born in 2005 and is our third child. He developed post-traumatic epilepsy 6 months ago. Two mornings ago ,we discovered his seizing body, and we don’t know how long he had been seizing. Thankfully, he was given a second chance. We are buying an alarm ASAP. Everyone has pointed me to your site as being the best. Thank you for generously serving others.
Mermelstein Family, Stamford, Connecticut
Thank you Danny for all you inspired. We can sleep easier at night because your legacy enabled us to receive a grant for an Emfit mat for our son. You provided us with more education than our doctors. Happy 19 in heaven.
Heather Thomas, Shoemakersville, Pennsylvania
My mother found out about this foundation. After battling insurance and getting no answers, Danny Did stepped up and funded the equipment my little man needed to monitor his seizures. My son is 8 years old, nonverbal and autistic. Thank you so much for giving kids with special needs a fighting chance!
Hull Family, Danville, Indiana
Thank you so much for the grant for our watch! It has changed our lives. Epilepsy entered our lives 1.5 years ago when one of our identical twin girls had her first seizure. She convulses, and then loses all feeling and ability to move on one side for 10-15 minutes. Her seizures are in the middle of the night. We haven’t slept peacefully since. Now, we have some peace of mind again. Thank you from the bottom of our hearts!
O’Malley Family, Indiana
We received the SAMi Alert and wow, what a difference it is making. We are feeling comfortable to put her in her own room (rather than her sleeping with me), but what I find the best so far is reviewing her videos. I was sensing that she was having seizure activity at night. I’ve been able to capture those videos and send them to her neurologist. This will be invaluable to be able to save these videos to look at again and show the doctor. This is still all so new to us, and I think we are still in shock that our little girl is struggling with epilepsy.
Campbell Family, Alabama
Thanks a million for every word of advice, every thought and effort that makes up Danny Did. And to any worried parent/loved one or individual touched by epilepsy, tell them to never give up. You’ll never know what a relief it has been to know Danny Did is out there. We may be miles away, but just knowing we have that support has made a world of difference to me. My son is proof that the work Danny Did does is critical for the epilepsy community. Please let Danny’s parents know I’ll be eternally grateful for Danny’s legacy.
Banner Pediatric Neurology Clinic, Mesa, Arizona
Thank you for sending the brochures. I was looking for suggestions for patient friendly publications and website information to provide to our teen and preteen patients for when I provide patient teaching. Unfortunately, a lot of the materials I located prior to learning of your website was presented in a format intended for physicians and medical personnel; it really would not appeal to my intended audience. I was pleasantly surprised to see your materials and look forward to presenting them to our patients.
Angi and Gabriella, West Jordan, Utah
Everyone was worried about me all of the time. The Danny Did Foundation really helped save my sanity. I hated feeling like a toddler. A lifetime of gratitude to the Stanton’s and the foundation team. We hope you guys know how much we appreciate everything you have done, continue to do, and that we are eternally grateful. If you think you’d benefit from any of those devices they have, shoot them an email! They’re such kind people.
Pediatric Neurologist, Chicago, Illinois
For its work on SUDEP education and epilepsy care, the Danny Did Foundation is an outstanding organization and a Chicago jewel!
Fortune Family, Newbury Park, California
Even though our daughter had to go to hospital today for a test, she was skipping around and was lighthearted when I told her about the monitor, and how she was going to be able to go back to her own bed in her own bedroom. We are so grateful.
Turner Family, Chicago, Illinois
We cannot begin to express our appreciation for granting us the monitor, we are hoping it will give us peace of mind. As we lay our son down at the end of the day, sleep is not something we get very much of, since we sleep with one eye open in fear of SUDEP. We are humbled by your generosity. Thank you for making a difference in our little boys’ life, as well as so many others living with this beast they call Epilepsy. I cry tears as this organization is absolutely amazing.
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. After the Disneyland event, my little boy was so excited to learn he’s not by himself. He actually met another boy 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!
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 nighttime activity. I am so thankful for Danny and all of the lives he has changed. Danny has 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 and they 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.
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. This is a game changer for our family.
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.
Mier Family, Erie, Colorado
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.
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.
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.
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!
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.
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!
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. Thanks again for allowing this to happen for our family!
Trejos Family, Miami, Florida
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!
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!
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.
Sharon Bollum, Los Angeles, California
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.
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.
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!
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.
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.
Hastie Family, Mt. Washington, Kentucky
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.
Moultrie Family, Raleigh, North Carolina
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.
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.
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. 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 overwhelming when we were putting together my furniture, a good overwhelming. I have my independence back, and I’m able to feel like a college student. Another thing that brings my family ease is the anti-suffocation pillow. 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
Thank you for making others aware of SUDEP. I hope the knowledge I have gained will help me keep my daughter safe.
Heilman Family, East Wenetchee, Washington
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!
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.
The Craven Family, Peoria, Illinois
I cannot 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.
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.