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.