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 are a few examples.
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!
From Michelle of PurpleDay.org
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.
