My name is Jennifer I was diagnosed with epilepsy when I was 13 and now I'm 31 I have been in 3 car accidents I did apply for the embrace 2 a long time ago and I haven't heard anything yet I'm really scared I'm really hoping I do get approved.
My daughter has several medical conditions, one of which is a seizures. They started a couple of years ago as partial complex and have evolved into clusters of tonic clonic seizures (aka grand mal) During the day she has constant supervision but a night, we were concerned about detecting her seizures. We put a baby monitor and in her room but there were times we did not hear her when she was having a seizure. This was terrifying because at time her body would twist and she would be face down! A friend referred me to the Danny Did Foundation, as they help families who have children with epilepsy and work with several different companies that supply seizures detection devices. We chose the Emfit Monitor since nighttime seizures were our main concern. The application process was relatively simple , followed by a phone interview. Overall it was a very simple process and they approved a grant for my daughter to get the Emfit. We received the funds in less than a week!! Simply Amazing!
We have been awoken by the alarm several times in the last few months..and words can't describe how grateful we are for that. It has given us a peace of mind when we put her to bed that when something happens, we will know and be able to provide comfort and medical support she needs. These monitors are not cheap or covered by insurance. The Danny Did Foundation was a true life saver by providing us a grant for this equipment. Thank you Danny Did!
My 14-yr old son who has autism suddenly developed seizures one night as he slept. He had several seizures soon after, all while he slept. I am so grateful to be nearby when he suffered them because he had turned blue from lack of oxygen.
So I decided to just stay awake while he sleeps and watch over him. But that is not sustainable. I went online and found an alarm that would chime when he's having a seizure to alert me. But it was too costly for us. As I dug thru the internet I found Danny Did. With very little thing to do, they purchased the alarm for my son. It has given us a lot of peace of mind.
I am forever grateful for Danny Did Foundation.
Our daughter was 2 and half when out of the blue at naptime she went into a Grand Mal seizire. It was the most terrifying experience. After squad took her to ER we were set up with a pediatric neurologist. We were set up with an hour long EEG which confirmed she was having seizures. She was started on Keppra and with each seizure the dose was increased. She was having Grand Mals in her sleep and my husband and I would sit bedside taking shifts all night. We were exhausted from not sleeping and seeing our daughter suffer. We were given info about the Danny Did Foundation. They funded us an EmFit Monitor. This has allowed us to finally be able to lay down and shut our eyes at night knowing that we will be alerted when she starts seizing. We can't thank The Danny Did Foundation enough. We are now able to sleep and be rested for her. Thank you from the bottom of our hearts. Our daughter is now 4 and half on 2 seizure meds has a few types of seizures. Has been diagnosed with a heart condition. But she is a very active and happy little girl. Thanks again from all of our family.
Our Son Gabriel had a childhood epilepsy syndrome that left us terrified and exhausted. His seizures often happened at night and could last from 3-15 minutes. Before we had the assistance of Danny Did we were constantly terrified, watching his every move every night. The Danny Did Foundation donated an Emfit Monitor to us and it allowed us to sleep for the first time in months! We cannot say how much their kindness has blessed our lives.
Our son Daniel has had severe seizures since he was 2 months old. For seventeen years he has had to have someone stay in the same room as him at night because so many of his seizures happen at night. They are life threatening and he must have rescue medications very often. The Danny Did Foundation provided us with a camera and sleep monitoring system that often detects seizures even while he's sleeping. This has brought an enormous amount of relief to us as parents. It has also been extremely valuable in watching him while awake in his room. We can give him a sense of independence and privacy, but yet maintain a vigil on him. The camera has detected many seizures already and alarmed so we were able to respond quickly and get him the help he needed. We are so grateful to the Danny Did Foundation for helping to give us this equipment and more peace of mind.
Our son Ryan, who is nine years-old, was diagnosed with generalized epilepsy in December 2015. It has been an uneasy road since, but the gift that this foundation gave us. has allowed us to sleep at night. During the day, we can keep a watchful eye on Ryan. However, nights were tough and go. We initially had a baby monitor, with sound only, to listen for a seizure at night. Unfortunately, this lead to many sleepless nights for us as every noise awoke us thinking it was a seizure. Danny Did donated a camera system to watch Ryan at night. It alarms if it senses any seizure activity. This level of comfort has given my wife and I the ability to feel human again because we are able to sleep again.
My son, Keithan, is 10& has benefited from the help Danny Did provides since he was 4. He has had seizures since 18months of age. Danny Did has given more than help, they've given us moments. Moments I can see my son not be so afraid, moments I can see him spend time with other people just like him at Disneyland Epilepsy Day, moments I can take a deep breath & thank God there is such a fine organization that gives families hope all in the honor of one little boy. Thank you, Danny. Thank you, Danny Did.
The Danny Did Foundation helped us to obtain a seizure monitor for our severely epileptic son Brian. Their services are so important because most people don't realize that epilepsy can result in sudden death. They are a very important organization so that parents like me can do everything in their power to safeguard their loved ones. Please donate generously to these wonderful folks. Let no child's life be taken for granted!
We can never thank the Danny Did Foundation enough for the peace of mind they provided our family. Our son Robbie has severe intractible epilepsy and has seizures multiple times a night. He was sleeping in our bed, we weren't sleeping much at all, for the first almost 2 years of his life. Our Sami Monitor has enabled him to move to his own room, have independent wind down time before bed and stay safe overnight. He sleeps much better and longer alone and we finally have a normal routine!
Danny Did helped us get sleep that lasted longer than 1 hour!!! Thanks to our new Sami monitor we have the piece of mind we need to sleep knowin it will wake us if anything happens. That is somwthing we never though we would have again!
The Danny Did Foundation gave our daughter her independence back. With the Smart Watch, which The Danny Did Foundation provided, she is now able to sleep in her own room again, and spend short periods of time alone for the first time. The watch will alert us to any seizures that she may have. As a teenager, being able to have her independence back has built her confidence. We'll be forever grateful to Danny Did!
I had heard of The Danny Did Foundation when I first started my journey researching Dravet Syndrome. My son was diagnosed with it almost a year ago, he is 3 years old. My son has constant night time seizure and I was searching for a product that would record, alert me or anything to let me know he was seizing. I looked all over and my friend told me about The Danny Did Foundation and how they helped their family get necessities they needed but couldn't afford. I found them online and sent in an application for a SamI monitor. I didn't think I would get one but I'd rather try then not. I got to speak with Tom and after he reviewed my application and speaking to him on the phone he granted me a grant for the SamI monitor. I broke down crying, it was such a special gift to my son. It was a beautiful moment, that I will remember forever. He truly made a difference for my son as well as for me. We use the monitor every.single.night! I can't thank Tom and The Danny Did Foundation for what they have done for us. They truly care and want the best for every child in need.
Our daughter has seizures only at night in certain phases of sleep. We were constantly laying at her feet, watching her every move. The Danny Did Foundation blessed our family with the Emfit Monitor! It has been such a stress reliever! We all sleep better since receiving the monitor! We are so thankful to the Danny Did Foundation!
Hi! My son Jeremiah received a Emfit monitor from the Danny Did foundation and I can't thank them enough! The wait wasn't very long and once our time came up it literally was seemless and very fast! We love our Monitor and very grateful to everyone who made this possible! Thank you Danny Did!! I have also shared our story with friends in the Epilepsy community and made sure to participate in SUDEP day and make sure to raise awareness daily for those who may not know
My son Anthony was diagnosed with generalized epilepsy at two years old. My wife and I were up all night, every night worried he would have a seizure without us knowing. We were terrified. I reached out to the Danny Did Foundation to ask questions and inquire about a monitor and how they work. I received immediate response and felt so much better while talking to Tom. He comforted me and informed me the Danny Did Foundation would send us a monitor. I was so thankful! I started crying and emphatically thanked him and the Danny Did Foundation for their support. My son is now 8 and with medication has been seizure free since 2015. The monitor is still on his bed and every time I look at it I think of what Danny Did for my family!
Joseph and Andrea Ham
Lake Jackson, TX
The Danny Did Foundation is aggressively spreading knowledge about SUDEP. Even within the Epilepsy community, too few people knew that epilepsy could kill. I have donated personally, referred people, and now am spearheading a fundraiser - I have increased my level of involvement because their mission is clear, their goals and activities are transparent, and they already have a track record of success. This is how a grass roots non-profit should work - making a big difference in a very tangible way right from the start.
The Danny Did Foundation is an amazing organization that has made great progress in helping those suffering from epilepsy. I have learned so much from them, not only about epilepsy, but on the strength of the human spirit. I have volunteered with them in the past and will continue to do so for many years to come.
The Danny Did Foundation is a professionally run organization. The Foundation is pro-active in seeking support and finding ways to help families and patients of epilepsy. Ending deaths caused by seizure requires movement and forward thinking -- all shown by this foundation. The Foundation made an immediate impact by donating movement monitors to families in need. Today, more than 40 monitors have been distributed to families around the world and our impact in the medical world continues to grow.
I was looking for help to get my granddaughter a movement moniter for her bed as she has seizures at night. The moniters are too costly for us to be able to buy one outright and The Dannydid foundation purchased one for her and had it shipped to us at no cost to us. They have truley been a blessing.
The Danny Did Foundation has made such incredible strides since it's inception a short 18 months ago. They have done an incredible job of spreading awareness of the dangers of SUDEP and epilepsy, which takes more lives than breast cancer(a grave fact I did not know prior). Moreover, they aggressively put awareness into action via a number of channels, most notably by initiating studies at several well renowned hospitals and donating seizure detection devices to families all over the US. This is an extremely important cause, and it is one I am very proud to be a part of.
I fell in love with Danny on Facebook! It's true--I first learned about the Danny Did Foundation on Facebook about a year and a half ago. It was shortly after Mike and Mariann Stanton started the foundation and corresponding Facebook page. His smile and personality came across loud and clear (from their Chicago location all the way to my home in California) in photos his family posted! Danny captivated me! His family let us all get to know him through photos with descriptive text. It didn't take long to fall in love with the whole Stanton family and witness their love for each other, their family, their neighborhood, and so on.
I have a 23 yr. old son with epilepsy--his first seizure was when he was 2 1/2 years old. My son was so much like Danny when he was in his preschool years--exuberant, athletic, eager to learn, always smiling, joking, laughing, and with hugs and love for everyone! I felt an instant connection because of our boys.
I have stayed pretty involved in different epilepsy communities online--wanting to reach out with encouragement and support to others, since we have a lot of experience under our belts living with a child with epilepsy. I say WE because living with epilepsy, does not just refer to the individual who has the diagnosis, it affects the whole family and friends too. I research and read a lot to try to stay ahead of the game--but epilepsy is still a mystery in so many ways...making it difficult to navigate and leaving many feeling frustrated and alone. Taking our story, our experience, what I've learned along the way--and giving back to others or coming alongside others is something I really enjoy doing. When I'm able to tell a parent of a child newly diagnosed with epilepsy-- "You aren't alone" "I've been in your shoes" "How can I help?" "I'm here to listen"--it empowers them and offers a lifeline in the midst of what can sometimes be a frightening, confusing, and isolating experience. There is one experience that I lack and can not say I have in common with people when they encounter it while dealing with epilepsy in their lives. There is one experience I haven't had that Mike and Mariann have--their son Danny died from SUDEP.
Sudden Unexplained (or Unexpected) Death in Epilepsy. Mike and Mariann's son Danny died from it. It wasn't my son... but I know it could have been. It could have been any one of the 3 million Americans affected by epilepsy or of the 50 million worldwide. The Stanton Family started, and are leading, the Danny Did Foundation with COURAGE, PASSION, and DEDICATION. The DDF is dedicated in its mission to prevent deaths (like Danny's) caused by seizures. I have chosen to support the Stanton family and the Danny Did Foundation because I believe in their mission, in their goals, in the fire and fight they carry in their hearts and in their heads, and finally because I believe in their boy--just like I believe in mine.
I wanted to spread Danny's smile, his story, and awareness of the Danny Did Foundation in Southern California. My initial contact to the Foundation was via email with DDF Executive Director Tom Stanton (aka Danny's uncle). I requested DDF silicone bracelets and SUDEP/Seizure Safety brochures to distribute at the Epilepsy Foundation Walk in Los Angeles where my son was captaining a team and our family and friends were walking together. The communication was encouraging and supportive. With approval from his family and the foundation, Danny was an "Honorary Hero"on our team. We stayed in touch with the DDF, and got to know another vital person to the Foundation--Mary Duffy, Chief Operating Officer. Mary is a neighbor of the Stanton Family--their kids all good buddies. Do you see a pattern of community in this Foundation? It's incredible!
One thing that I find attractive and appreciate about the Danny Did Foundation is their intergenerational intention in their goals, actions, and appeal. They recently sponsored an essay contest with a $1000 scholarship award encouraging eighth grade students in Chicago to address in their essays 1) The importance of helping non-profit foundations and 2) A projection of how to best introduce and incorporate the Danny Did Foundation into the high school experience. They awarded the winner in June at the DDF Hearts & Hugs event. Another great move?...The Danny Did Foundation has a Kids' Liaison! Mary Grace Stanton (Danny's sister) fills that role, and she's involved other kids by inviting them to complete and submit "Get Seizure Smart" quizzes. In return, she sends them a Danny Did bracelet. The Danny Did Foundation holds regular events--which appeal to children and adults.
The Danny Did Foundation has a definite presence in their local community and beyond. They have a knack for bringing people together...a diverse group of people united by Danny and a desire to prevent deaths caused by seizures.
I really can't express in this space all that there is to be said about the Danny Did Foundation. You'll need to go check out the Danny Did Foundation website at www.dannydid.org to explore and experience it for yourself. While you are there, be sure to check out the testimonies of what people are saying about the Danny Did Foundation. Oh, and you can leave a "Hey Danny," message on the home page.
The Danny Did Foundation has been instrumental in helping my family gain valuable information for our five year old daughter who has epilepsy. They have helped direct us to a company who makes a seizure detection device as well well as enabled us to open the lines of communication with our doctors regarding epilepsy and SUDEP (Sudden Unexplained Death in Epilepsy). We are now working with the DDF to help our state epilepsy foundation give information packets to the treating physicians who can then pass the information along to patients.
Almost one year ago, I heard Mike Stanton share the story of his son, Danny, who died tragically from epilepsy. Mr. Stanton then went on to explain how this awful event led to the creation of The Danny Did Foundation, which seeks to raise awareness of epilepsy, S.U.D.E.P., and ways to monitor for nighttime seizures. After the speech, I told Mike Stanton about my own daughter, Lily, who also suffered from epilepsy, and The Danny Did Foundation donated an Emfit, a device that monitors for nighttime seizures. The Danny Did Foundation did not want Lily to suffer as Danny did. Now, it's almost as if Danny is watching over Lily each night as she sleeps.
The DDF has opened my eyes to a huge issue affecting thousands of people that have seizures. Its website provides a number of powerful and compelling personal testimonials from parents that highlight the lack of information provided by doctors. I learned that doctors are not advising seizure patients that a seizure can result in death. DDF has been working tirelessly to raise awareness on this issue by reaching families affected by seizures and sharing, firsthand, the harsh reality of seizures. The Foundation has also identified a new technology, the Emfit monitor. This monitor sounds an alarm when a person experiences a seizure while sleeping. It is heart wrenching that this alarm isn't prescribed to every patient that has experienced a seizure while sleeping. You have to applaud the Foundation for purchasing almost 50 Emfit monitors over the last year for families that are affected by seizures. The DDF website is filled with notes thanking the Foundation for informing them about Sudden Unexplained Death in Epilepsy and the Emfit monitor. The Foundation is doing what we hope will one day will be done by every doctor; inform seizure patients that death can result from seizures and prescribe a seizure monitor to help prevent these tradgedies.
I was recently added as a new board member following my involvement with the organization over the past 18 months. The Danny Did Foundation is a newly formed oganization whose mission is to help spread the word about SUDEP and help prevent deaths caused by siezures. I became involved because my friend lost her 4 year old child to SUDEP. Although the loss of Danny certainly hit close to home, I also realized this could have happened to anyone. As a mother, my friend did everything Danny's doctors asked. The problem is that they knew more than they shared with her. Many of us know others who deal with seizures. I know a number of people including my nephew, a co-worker and another friends son. Since I have been involved with DDF, I have heard many personal stories about their experiencs with seizures. It is significantly more common that I ever realized. Do you know that more people die from SUDEP than from breast Cancer? We need awareness and understanding. We need doctors speaking openly and candidly about SUDEP. We need devices to monitor seizures. DANNY DID is helping to accomplish all of these things. I am proud to serve as a board member for this organization! The people behind the foundation are extremly motivated, dedicated and are people who will make things happen. I wish I could give people back the loved ones that were taken by SUDEP. Since that's not posible, I plan to spread the message of The Danny Did Foundation to the best of my abilites with the hope that we can help others.
When Danny Stanton died of SUDEP, the Stanton's could not have known what an impact their little 4 year old boy would have on so many people. Being such an energetic, terrific kid, he was best friends with my nephew, Charlie. When we heard that Danny died that December morning, the sadness was overwhelming! Great kid, great family, great friends, How could this happen to them? Most of us assumed that Mike and Maryann would not be able to function after this tragedy. We hardly knew Danny, and we could not deal with his death. But, his parents persevered. Instead of climbing into bed and not coming out, they wanted to make it their mission raise awareness of SUDEP. During the time of their deepest sorrow, they were also thinking of others. My first reaction to Stanton's setting up the foundation was that of complete awe. How were they going to be able to do this? I hugged my kids extra tight for months, little things my own boys did made me cry, where were the Stantons getting this courage? But they have managed to take a complete tragedy and turn that around in honor of their son. They truly care about raising awareness of SUDEP and making sure that this doesn't happen to one more little boy or girl. Danny has become an angel. Through the DannyDid Foundation his message and love of life will protect our children.
The Danny Did Foundation is an outstanding organization comprised of caring, thoughtful, forward-looking, and motivated folks that work tirelessly towards their goals:
(1) advancing awareness of Sudden Unexplained Death in Epilepsy (SUDEP) and enhancing the SUDEP communication model between medical professionals and those afflicted by seizures, and (2) the mainstreaming of seizure detection and prediction devices as well as other technologies that may assist in preventing deaths caused by seizures)
Every decision they make, every interaction they have, every dollar they spend goes towards achieving their goals. Every time I talk to those associated with Danny Did or attend one of their events I feel compelled, motivated, and inspired to help in anyway possible. The DannyDid foundation does everything right and is making a significant positive impact.
My 11 year old Son Brynnon suffers from Epilepsy and Borderline Intellectual Functioning. I stumbled upon Danny Did while doing research for my Son's outcome. I was horrified to learn about SUDEP, especially since none of the Physicians that we had seen had ever mentioned it to us. I was told over and over again that having a seizure while sleeping is not common and would not happen again after his first that we saw in early 2009. After learning about SUDEP from The Danny Did website I started staying up at night to watch him sleep. It was realized then that he was having an average of 3 Grand Mal Seizures a night and countless myoclonic seizures. I started sleeping with Brynnon and our infant on the sofa bed fearing that he would have a seizure and no one would be with him. I contacted Danny Did and spoke with Tom Stanton. I explained that we are a one income Home School Family and could not afford the EMFIT Seizure Monitor. He was very informative and said that they would like to send us one. My Son, My baby and I have been happily sleeping in our own beds since.
I dont know where we would be without the Danny Did Foundation. Almost 2 years ago ym daughter was diagnosed with Epilepsy at the age of seven. During our hospital stay and since with her neurologists, we were never told of SUDEP. We had no clue such a real and scary thing existed. Thanks to the Danny Did Foundation we were able to get informed and they even went as far as helping us financially obtain (based on our financial need) an Emfit movement monitor so that we can be alarmed if she has seizures at night. For monthes after she was diagnosed I slept on her floor terrified that she would have a seizure at night without me knowing and since the Danny Did Foundation came into my life, I sleep so much better. Not only have they helped me out in the way in which I just explained but they have warmed ym heart and made me feel like a part of the family. They actually care about me and my daughter and do it all in the name of their sweet boy that they lost. I have recently volunteered for the Foundation, speaking at a local Epilepsy conference and getting the word out on their behalf. I hope to continue to do more volunteer work, it is the least I can do for such an amazing group of people!
Our oldest son was diagnosed with a seizure disorder several years ago. We contacted Danny Did for more information for an Emfit device and received one within days. The device detects nocturnal seizures and does an amazing job. The prompt and positive experience is highly unusual but so greatly appreciated. The device has notified us 4 times of our sons seizures and possibly saved his life.
The Danny Did Foundation is a front runner in educating the medical community and those affected by epilepsy and seizures about Sudden Unexplained Death in Epilepsy (SUDEP.)
Danny Stanton, Mike and Mariann Stanton’s 4 year old son, passed away from SUDEP on Dec. 12, 2009. They made it their mission to ensure that other families would not have to endure similar tragedy, and took action to establish this foundation almost immediately after loosing their precious Danny.
In the short time since they established the foundation they have made huge strides nationwide, and even worldwide. Danny Did Foundation has touched the lives of over 12,000 people via Facebook, have established a reputable Board of Directors – including a leading Doctor of Neurology, have purchased Emfit Monitors (a device that detects seizures when a loved one is in bed) for over 40 families, and have been the driving force behind ground-breaking clinical trials of the Emfit Movement Monitor at Rush University Medical Center, Northwestern University Comprehensive Epilepsy Center, and Children’s Memorial Hospital Epilepsy Center.
This organization is making a difference, and they are paving their own path. The Stanton Family, and the entire Danny Did Family, are driven by the enormous love for an amazing little boy named Danny Stanton..
I came about learning about Danny did through the epilepsy foundation of MN after we lost our 22 year old son to SUDEP. Their website is the place I have learned the most about seizures and unfortunately I already learned that a person can die from a seizure, in their sleep. The people at Dannydid are the most compassionate people I have spoken to and there determination and passion to get the awareness about SUDEP exceeds expectations so no other family has to go through what we did and what the Stantons have. I am hoping through Dannydid and what we are doing in MN we, together will find a solution so this never happens again. Patients need to be educated and know all what is out there to help with their seizures...not just mask it.
I have been a volunteer for this organization from the beginning! As soon as this tradgedy happened The Stantons got to work not only to raise money to more importantly to raise awareness for SUPED. It was a term that I had never heard of! The first event was buzz cuts for danny it was an emotional day for everyone! This last year I again participated in the Buzzcuts for Danny and although emotional it was also an eye opener that this organization is doing big things! I also remember being at the first hearts and hugs benefit and realizing how many people have been effected by this tragedy and realizing how shocking it is that more people don't know that SUDEP exists! I hope The Danny Did Foundation is able to continue their journey to raise awareness! I am very blessed to be a part of this amazing group!