Sudep
I've read all your posts on SUDEP deaths. Lost my precious daughter, Donna age 41 who suffered 38 years with refractory epilepsy or as some would say non-controllable seizures on Nov. 15, 2008. According to the ME, it wouldn't have mattered if both my husband and I were in the room we could not have saved Donna. She was asleep on her back when she passed. So no safety pillow would have meant anything. According the the experts with SUDEP the brain tells the heart to stop and starting is not an option. For those who have had close encounters, I am glad you made it. What we need is research to find the causal relationship between SUDEP and the heart. Baylor University in Texas is leading the research as are others. Donna in death gave the ultimate to research to study and possibly some valuable information to save one life. We are also part of the study with our blood. They are looking for a gene in our blood or a mutation thereof. They are also looking into families with severe heart disease to see if there is a genetic link. So take heart all of you maybe soon we might have a clue. As of right now all any of us as parents can do is try anything to save ourloved ones. May God bless all of you on your long journey and I will keep you in our prayers. I remain Dee Donna's proud mom.
I've read all your posts on SUDEP deaths. Lost my precious daughter, Donna age 41 who suffered 38 years with refractory epilepsy or as some would say non-controllable seizures on Nov. 15, 2008. According to the ME, it wouldn't have mattered if both my husband and I were in the room we could not have saved Donna. She was asleep on her back when she passed. So no safety pillow would have meant anything. According the the experts with SUDEP the brain tells the heart to stop and starting is not an option. For those who have had close encounters, I am glad you made it. What we need is research to find the causal relationship between SUDEP and the heart. Baylor University in Texas is leading the research as are others. Donna in death gave the ultimate to research to study and possibly some valuable information to save one life. We are also part of the study with our blood. They are looking for a gene in our blood or a mutation thereof. They are also looking into families with severe heart disease to see if there is a genetic link. So take heart all of you maybe soon we might have a clue. As of right now all any of us as parents can do is try anything to save ourloved ones. May God bless all of you on your long journey and I will keep you in our prayers. I remain Dee Donna's proud mom.