Teen boy ‘turning to stone’ withrare condition could become ‘entombed in body’

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A teenage boy who is “turning to stone” could become trapped in his own body.

Jaiden Rogers, 15, suffers from Stiff Skin Syndrome, which causes the skin to harden and has affected just a handful of people worldwide.

The teenager, from the city of Alamosa in Colorado, the US, was diagnosed with the disease in 2013 after his mum found a lump of hard skin on his thigh.

It spread to his legs, stomach, arms and neck, confining Jaiden to a wheelchair.

His parents have launched a GoFundMe page and are raising money to try and take him to Italy and get specialist treatment before the disease crushes his chest.

Mum Natalie, 54, said: "Jaiden is basically turning to stone and it's become so hard that he can't really move his legs.

"If he doesn't get treatment, doctors say he'll become entombed in his own body.

"His whole body is turning to stone because this disease starts from the inside and works its way to the skin. Once it reaches his skin, it means all his body underneath is also hard like stone.

"The skin has started compressing on his heart so he can't breathe without a ventilator and it's pressing on the other organs so they will start failing.

"His future doesn't look good."

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Jaiden’s family want to try an experimental stem cell treatment in Italy, having exhausted their medical options in the US.

Natalie and retired government worker husband, Tim, 56, have so far raised $355,000 (£269,000) of their $1.5m (£760,000) goal.

The mum-of-three said: "If we don't get him to Italy, he won't live.

"Once he has treatment to stop the progression of the disease, he'll be able to have therapy to help loosen the skin.

"The doctors think he's the only one in the world with the condition and there's only been 41 documented cases in the world.

"It started when we found a hard spot on his thigh.

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"No one really thought anything of it but we took him to the doctors and after some tests, the doctor called me and told me to sit down.

"That isn't what you want to hear from a doctor.

"I'd never heard of the condition before and most doctors haven't heard of it so I didn't think much of it until they continued telling me what it would do.

"Within three months it had really started spreading down his leg and he needed a wheelchair.

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"It was horrible and he was in severe pain."

Before his diagnosis, Jaiden was a football fanatic but is now destined to spend the rest of his life in a wheelchair despite taking chemotherapy medication to help slow down the spread of the disease.

He also had to drop out of school and is being taught at home by his parents.

Natalie, from Alamosa, Colorado, said: "He's very quiet about it, he doesn't like talking about it but he cries because it hurts.

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"He used to love going to the park and playing soccer and he's obsessed with Ed Sheeran.

"He was so active, he was all over the place like any other kid but now he sleeps most of the day because of the pain killers he's on.

"This disease has caused him to have no friends because he is in so much pain.

"He'll always be in a wheelchair and we can't change that but we need to get him to Italy so we can at least prolong his life.

"Basically, if we don't get him there, he won't live."

Click here to donate to the GoFundMe page.

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