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Strood school girls help brother Oakley Orange, who survived Stevens-Johnson syndrome launch Oakley's Outings charity with Share a Star

By: Jenni Horn jhorn@thekmgroup.co.uk

Published: 00:01, 13 September 2014

Updated: 16:55, 13 September 2014

Sisters Tilly and Maisie Orange have cut their long locks to help their brother launch a charity for sick children.

Oakley Orange was given just a 65% chance of survival when he was diagnosed with Stevens-Johnson syndrome last year.

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.

Little Oakley was left fighting for his life after a reaction to medication

Six months after being discharged from hospital, Oakley, eight, is now setting up a charity to help other sick children.

His sisters Tilly, seven, and Maisie, 13, have kick-started the fundraising with a sponsored hair cut. The girls were given their stylish new looks at Lush hairdressers in Gravesend, under the watchful eye of Oakley and mum Lorraine.

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Their hair will be sent to the Little Princess Trust, which makes wigs for children who have lost theirs through illness.

Hairdressers Rochelle Turner and Natasha Collier with Oakley, Maisie and Tilly Orange

Oakley’s charity, called Oakley’s Outings, will offer fun trips and days out to poorly youngsters and their families.

It has been set up as 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, including Oakley.

She said: “I’m extremely pleased to be working with the incredible Orange family.

“I have always wanted to extend Share a Star by offering wishes too, and by working together we are hoping to make a real impact once we have raised the funds we need to in order to continue with this venture.

Jessica Taylor is confined to her bed due to chronic fatigue

“We aim to help as many seriously ill children, not forgetting their siblings, as possible.”

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.

Oakley with sisters Maisie, 13, and Tilly, 7

“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.”

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