A teenage boy who is turning to stone has been warned he'll become entombed in his own body if a cure isn't found.
Jaiden Rogers, 15, is thought to be the only person in the world with Stiff Skin Syndrome, a disease which causes the skin to harden, leaving him confined to a wheelchair and at risk of organ failure as his stone-like skin presses on his lungs and heart.
The boy was diagnosed in 2013 after his mum Natalie, 54, found a lump of hard skin on his thigh which quickly spread to his legs, stomach, arms and neck.
“Jaiden is basically turning to stone and it's become so hard that he can't really move his legs,” Ms Rogers explained.
“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 it way to the skin. Once it reaches his skin, it means all his body underneath is also hard like stone.”
The family, from the US state of Colorado, are desperate to find a medical solution to the boy’s incredibly unique disease – and time is of the essence.
"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."
Natalie and her retired government worker husband, Tim, 56, are now raising funds to take their son to Italy for treatment to help slow the spread of the disease before it crushes his chest.
“If we don't get him to Italy, he won't live,” said the mum of three.
“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.”
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.
“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 [doctors] told me what it would do,” Ms Rogers said.
“He's very quiet about it, he doesn't like talking about it but he cries because it hurts.
“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.”
The family is continuing to seek a fundraising target of $1.5 million for Jaiden’s treatment and care on a long-standing GoFundMe page.
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