Many of you will already know my story, however for those of you that don't I will give you some background information. The charity that I am running for is Epilepsy Bereaved. The reason that I am associated with this charity is through tragic circumstances. 13 years ago I took my daughter Billye to hospital on the 17th December as she was having an epileptic seizure. This was the fourth and the last seizure that she ever had. After several hours of total chaos in the hospital I was told that my daughter was dead.As you can imagine this is the worst thing that could ever happen to a parent, especially as I had no idea that people could die from epilepsy. Billye was a very healthy, happy, little nine year old girl.
When I discovered Epilepsy Bereaved I weighed 6 stone and was struggling to survive. Friends and family tried to help me but it was through contacting E.B that I discovered that Sudden unexplained Death in Epilepsy (SUDEP) was not an uncommon occurance, particularly in children and young people.This is my story, but the sad fact is there are thousands of stories just like mine happening every day.
There are 3 seizure-related deaths a day in the UK and most of these are sudden and unexpected (SUDEP).
Sudden Unexpected Death in Epilepsy (SUDEP) is uncommon but is a recognised syndrome where a person with epilepsy dies suddenly and no other cause of death is revealed. Around half of epilepsy deaths are attributed to SUDEP.
Epilepsy Bereaved (EB) is committed to preventing SUDEP and other epilepsy deaths through research, awareness and influencing change.
They are dedicated to supporting families affected by SUDEP and other epilepsy deaths.
EB carries out and supports research into the causes of SUDEP and other epilepsy deaths. The charity is working in partnership with Kings College Hospital London with the aim of finding ways to prevent SUDEP and other epilepsy deaths.
Epilepsy Bereaved is a small but dedicated charity. Please support me and help them to do all that they can to prevent unnecessary deaths from epilepsy. Please help me to raise as much money as I can for this amazing charity......wish me luck for the run that I will be walking!!
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