Published: 00:01, 07 April 2014 |
Updated: 15:52, 07 April 2014
Oakley Orange was left fighting for survival after being diagnosed with Stevens Johnson Syndrome (SJS) after an allergic reaction to epilepsy medication.
The brave seven-year-old is now on the road to recovery and supporters are raising money to send the Strood schoolboy on his dream holiday to Disney World.
On Thursday, family and friends will be taking on the challenge of skydiving 12,000ft from a plane.
Oakley’s nanny Sue Orange said: “It all started when we were talking about Oakley at home and I said something about jumping out of a plane. Oakley’s aunt Sarah said it was something she had always wanted to do.”
Mrs Orange, 61, rallied family and friends, contacted Headcorn aerodrome, sent out sponsor forms and now 10 people are taking part.
Among them is internet radio DJ Steve Thorneycroft, from SkyHigh Radio, who heard about the jump and signed up, as well as Morrison’s staff from a store in Littlehampton, West Sussex, where Oakley’s grandparents live.
Mrs Orange said: “Oakley has received so much support from all over the world. So many people have been touched by his story. I think it is because Steven and Lorraine [Oakley’s parents] have been so open. Everyone has seen those horrific pictures of Oakley’s skin on his Facebook page.”
She added: “I think Oakley has become a figurehead for SJS survivors all over the world.”
SJS is a condition where the top layer of skin becomes detached from the lower layers. Oakley was given a 65% chance of survival. He lost all his skin as well as his fingernails, toenails and hair.
Okaley spent three months in a specialist burns unit at hospital, but he is now back at home in Empire Road, Strood, and getting stronger every day.
Friends and family are hoping to raise enough money for Oakley, mum Lorraine, dad Steven, sisters Tilly, six, and Maisie, 13, and brother Ellis, 12, to go Florida’s Disney World.
Fundraisers have included a fun day and a raffle.
Earlier this month a five-a-side football tournament at PlayFootball in London Road, Rainham, called Oakley’s Cup, was held.
Each of the 10 teams playing paid £30 to enter, raising £300 on the day.
Organiser Chris Barlowcorr said: “It was really nice and the weather was great. Oakley was there too and he and everybody enjoyed the day.”
You can sponsor DJ Steve Thorneycroft at skyhighradio.co.uk or donate to Oakley’s fund at www.gofundme.com/5vguvk
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