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Published: 00:01, 29 August 2014 |
Oakley Orange was given just a 65% chance of survival when he was diagnosed with Stevens-Johnson syndrome.
The condition, triggered by an allergic reaction to epilepsy medication, meant Oakley lost all his skin as well as his hair, toenails and finger nails. He spent weeks in intensive care, battling hypothermia and a lung infection.
Six months after being discharged, Oakley, eight, is now setting up a charity to help other sick children.
Oakley’s Outings will offer trips and days out to youngsters and their families. It will be a branch of the Share a Star charity, run by Jessica Taylor who has ME.
Jessica, 23, who has been bedridden for eight years, sends ‘stars of hope’ to poorly youngsters.
Oakley’s sisters, Tilly, seven, and Maisie, 13, are helping him to kick-start his fundraising.
They are being sponsored to have their long hair cut. Tilly is having 10 inches cut, while Maisie is losing seven inches.
Their locks will be sent to the Little Princess Trust, which makes wigs for children who have lost their hair.
Mum Lorraine said: “This is the first fundraising we have done for Oakley’s Outings. The girls wanted to do something, and think the charity is brilliant.”
Lorraine, of Empire Road, Strood, added: “Oakley didn’t fit the criteria for other charities such as Make a Wish and Starlight – they can’t help everyone. So we want to help other children like Oakley who don’t tick the boxes.
“We want to offer children a chance to enjoy a day being a kid, when they don’t have to worry about hospital appointments or blood tests.
"We will try to cater the outings to individual children and if they are too poorly to go out, we will do a party for them at home.”
Oakley will be going along today when Tilly and Maisie have their hair cut at Lush hairdressers in Gravesend.
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