This is Daniel George Stanton, also known as Danny. He was born on March 2, 2005. At 2 years old, he had his very first seizure. His parents made sure that he got the proper medical attention and were told, as we were, that children can have unexplained seizures with no known cause. He ended up having more seizures, mostly in his sleep. On the morning of December 12, 2009 his parents found his lifeless body in his bed. After trying to revive him, neighbors trying to revive him and the hospital staff trying to revive him, he was pronounced dead.
This is not the first or the last child who will die in this way. There is a term for this, it is called SUDEP, Sudden Unexplained Death in Epilepsy. While I was at the Epilepsy Walk there was a booth with numerous stories of beautiful children and teenagers who have died in this way.
I know you are thinking the same thing I am, something has to be done about his!! But how? I have always stressed that just talking about it, letting people know about it, can make a huge difference. I had no clue about Epilepsy until I was sitting in the hospital next to my 7 year olds bed wondering what the heck happened to her. One moment she was sitting on my lap getting ready to go on a fun trip with grandma, next she was seizing in my arms. Why?!!! After being released from the hospital, I was a nervous wreck. I slept on the floor of her room and with every movement, I was at her side. Needless to say, I never slept. We tried buying a baby video monitor, but what good does it do if you are asleep, her seizure wouldn't wake me up. Something has to be available out there!!!
Shortly after she was diagnosed we started going to meetings at a foundation called the
Epilepsy Alliance of Orange County. Their monthly meetings brought in neurologists and specialists to speak with parents and patients. Before attending your first meeting, they recommend taking Epilepsy 101. While taking that class, amongst numerous other things we learned about something called an EMFIT. It was a monitor made for the bed that would alarm if the person with Epilepsy had a seizure in their sleep. This is exactly what we needed!!! Where do we get one? Can I have it delivered first thing tomorrow morning?! Oh, it cost how much?...............
Needless to say, the EMFIT monitor is not cheap. But it is necessary. We were told that the EMFIT is covered by insurance over in Europe because it is seen as a necessity for people with Epilepsy. But not here in the United States. So, we would have to pay out of pocket. We are a military family with 3 small kids, how are we going to be able to afford this monitor? We ended up putting it at the back of our minds, constantly wondering how long it could take to raise the money, we need this monitor!!! Not only for our peace of mind but for the safety of our child.
That's when a friend of mine, whose little girl was recently diagnosed as well, told me about the
Danny Did Foundation. She said that they can help us financially with getting an EMFIT. This seemed too good to be true. I went to their website and read Danny's story. I was heartbroken! I was scared, could this be my future? After composing myself and after a few prayers, I e-mailed the foundation. I let them know a little about Cassidy and asked if it was true if they could help. The next day I got a phone call from a man named Tom. He is Danny's Uncle. We talked a little about Danny, Cassidy and he made sure I knew all about SUDEP. He told me that they would be willing to help me get an EMFIT. I was overwhelmed. I wanted to roll up in a ball and cry. Never have I come across such genuine, kind hearted generous people. They have turned their heart break into something wonderful. They could have easily gone under the radar undetected, mourning the loss of their sweet boy. But they haven't. They care about people living with Epilepsy. They want to see them survive and live the type of life Danny most certainly would have. Pleas,e take the time and go to their website. Read Danny's story and find out how you can help!
November is Epilepsy Awareness month. One of the things that the Danny Did Foundation is doing is raising money for the cause. They are asking 2,000 people to donate $25. Can you decide to make coffee at home instead of get it out in town? Can you decide to make more meals at home instead of buy out? Do you have any extra change lying around that you can turn into cash? These little things can make a difference and instead of being satisfied with your morning latte, you can have the satisfaction of helping people affected with Epilepsy. Lets help our children grow to see their future. Please, help in any way you can. Post this blog to your page, whether you have your own blog or Facebook, Twitter......anything. Lets get the word out!!!!!!!!!!!!
