Dial 999 when ANY of the following apply:

Further information on epilepsy

Charlie Patton Burns 04 Oct 01 ~ 11 Oct 11

Website: http://www.sudep.org Contact line for bereaved 01235 772852 (24 hour answering machine) Post: PO Box 112,Wantage, Oxfordshire,OX12 8XT

A first seizure. A seizure that continues more than 5 minutes or a series of seizures without full recovery between them. Persistent breathing difficulty (Often the person may appear to stop breathing briefly during the seizure, but breathing should resume quickly; if it does not, call 999, check for a pulse and if necessary, begin CPR.) If any injuries are sustained during a seizure. Persistent confusion or unconsciousness. A significant change from that person's usual seizure pattern in terms of seizure type, seizure length, or associated symptoms. http://www.facebook.com/CharlieFarleysSudep Awareness Help us to raise the awareness of SUDEP, just visit our links below and share them with your friends:

10 Years of Joy

SUDEP Awareness Sudden Unexpected Death in Epilepsy The Silent Killer

http://www.youtube.com/watch?v=yBlJjdek7YA

http://www.justgiving.com/SUDEP-Awareness Txt CHAZ96 (amount) to 70070

www.justgiving.com/SUDEPAwareness

Our Story
Charlie Patton Burns 04 Oct 01 ~ 11 Oct 11 Until the 07 Oct 11 Charlie was a perfectly fit and healthy 10 year old boy. Four days later on the th th 11 October 2011, a week after his 10 birthday our gorgeous little boy died. Charlie had his first witnessed seizure on Friday th 7 October 2011. The Paramedics arrived some 12 minutes later and took over. They incorrectly diagnosed this incident as a Febrile Convulsion. Over the weekend Charlie was fine but we were not happy with the diagnosis, on Monday 10 Oct, we took him to see our local GP. Charlie explained that he often woke up during the night gagging and needing a drink and quite often couldnt feel the rest of his body. Our GP suggested that Charlie might be suffering with Nocturnal Epilepsy and referred him for an emergency appointment to see a Neurologist. th The earliest available appointment was the 18 November 2011. On Tuesday 11 Oct 11, Charlie went to school as normal, showing no signs of sickness or temperature throughout the entire day. He played with his mates in the new recreational area in Larkhill after school until we called him in. He was totally himself and took him to visit his sister at boarding school. We had a lovely evening and Isabella felt much better having seen Charlie, who was his normal self and we had such a happy and funny time together. Charlie went to bed that evening at 8:45 pm, an hour later he had died. We were downstairs and heard nothing! Charlies 2 seizure caused a bleed to the brain, and ultimately killed him. Nobody can tell us categorically that he only had two seizures, because if he had been having nocturnal seizures, he may have had others that went unnoticed. We have recently had the Coroners Inquest which recorded Death from SUDEP. A silent Killer! We had never heard of SUDEP before the death of our gorgeous little boy. More worrying still, is that many people in the medical profession have also never heard of SUDEP, and yet more people die per year as a result of SUDEP than to AIDS and Cot Death combined. Everybody knows about Cot death, and it seems that very few people know about SUDEP. We just dont understand why SUDEP seems to be hushed up and not openly and very publically acknowledged. We have since leaned that Charlie fell into a high risk category due to his age, gender and the fact that his seizures appeared to be nocturnal. How does such a fun loving, full of life little boy suddenly drop down dead, and it goes unnoticed by the medical professionals? Our mission in life is to make as many people as possible aware of this silent killer.
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The Facts

SUDEP is when a person with a history of epilepsy or seizures dies suddenly and prematurely and no other cause of death is found. The first seizure or any seizure lasting longer than 5 minutes should be referred to a medical expert. There are around 40 types of seizures and a person may have more than one type. Epilepsy can affect anyone, at any age and from any walk of life. 456,000 or 1 in 131 people in the UK have epilepsy. Every day in the UK, 75 people are diagnosed as having epilepsy. At least 1000 people per in the UK alone die of epilepsy related issues. 400 of the 1000 deaths could be avoided. Young adults with epilepsy are almost 24 times more likely to die of SUDEP. SUDEP deaths in the UK have risen by 31% in recent years.