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.
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!
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
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.
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.
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.