Brave 'butterfly boy' loses battle against killer skin disease

A NINE-YEAR-OLD boy whose skin was as fragile as a butterfly's wings has lost his fight for life.

Jordan Young suffered from a rare genetic disease that caused his skin to flare up in painful blisters at the slightest touch. He spent almost his whole life in constant agony, and he had to be wrapped in bandages every day to protect him from the world around him.

But the youngster became seriously ill after he contracted an infection that spread to his major organs. He died in hospital moments after he said goodbye to his parents, Fiona and David.

Mrs Young, 38, said yesterday: "At the end Jordan just wanted all the pain to go away. We're devastated that he's gone, but it's a great comfort to us that he's not suffering any more.

"I always knew there would come a day when I would lose him, but I thought I had more time. I really thought he would make it into his thirties. I wish he was still here."

Only around 5,000 people in the UK suffer from epidermolysis bullosa (EB). The inherited, incurable disease blighted Jordan's life from the moment he was born. It made his skin so fragile that it would blister up then it would tear and fall from his body, leaving him in pain.

All Velcro, zips and fasteners had to removed from his clothes to protect his skin, and when he ate, a special gel had to be applied to his lips to stop them from blistering. But he remained upbeat.

Mrs Young said: "He coped so well with everything. Despite the pain he would always say 'thank you mummy' whenever I changed his bandages, then give me a big cuddle.

"We were joined at the hip. We even discussed things together that you wouldn't expect a child to understand."

Four years ago, with his condition deteriorating, Mr and Mrs Young decided to leave their home in Elgin, Moray, and move to Milton Keynes to be nearer Great Ormond Street Hospital in London.

However, despite the specialised treatment, Jordan showed no sign of getting better and spent more and more time in hospital.

On 28 July doctors discovered that he had contracted an infection that had got into his skin. It rapidly spread through his tiny body and got into his throat, lungs, and bowels. He died on 18 August.

Mrs Young said: "I'm going to miss his character and his sense of humour so much. He could always tell when I was feeling down and would always make me laugh to cheer me up."

Jordan's funeral will take place in Milton Keynes. His favourite song, Reach for the Stars by S Club 7, will be played at the service.

Mrs Young said: "Jordan used to sing that to me. It would cheer us both up and make us feel that everything was going to be all right."