SUDEP Action

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Fundraising in Charlie's memory

Source - Salisbury Journal

THE sky’s the limit for the family and friends of a ten-year-old boy who died suddenly from an epileptic seizure after they smashed their two-year fundraising target with a sponsored skydive.

Jan, Barry and 16-year-old Izzie Burns have been organising a host of events to raise money for SUDEP Action since little Charlie Burns died in October 2011.

Charlie was a fit and healthy boy before he died after suffering two seizures in four days. An inquest concluded it was sudden unexplained death in epilepsy (SUDEP), a condition his parents were unaware of before Charlie’s death, and since then his family have been campaigning to raise funds and awareness for the charity.
They set out to raise £10,000 last year, which they achieved, and wanted to raise £11,000 this year as it would have been Charlie’s 11th birthday, bringing their total to £21,000. But eight friends and family took part in a skydive on Saturday, raising almost £4,000, which saw them well surpass 
their target, and they have now raised a massive £25,100.

Izzie, who was too young to take part in the skydive event last year, battled back from an ear infection to take part and jump from 14,000ft.
Mrs Burns said: “We’re so immensely proud of her. She took part in the run in July and really wanted to do this but she was up all night with an ear infection.”

The family want to thank everyone who has helped them raise money so far.

“We’re so chuffed, this has been the help of so many family and friends who have crusaded for us,” said Mrs Burns. “This year has gone so quickly with all the events we’ve organised and a visit to Parliament, it’s been a bit of a blur. This local area is the crux of our support and we need to raise the awareness because it helps save lives and we need the money to help fund medical research, which is so ground-breaking and so important.

“It’s only a small charity and every pound makes a difference. We are channelling our grief into raising awareness to stop other families having to go through what we have. Charlie died in four days and people need to know this could happen to them.”

Source - Salisbury Journal