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 youngster was diagnosed in 2013 after mum, Natalie, 54, found a lump of hard skin on Jaiden’s thigh which quickly spread to his legs, stomach, arms and neck.
Natalie, who is a stay-at-home mum, said: “Jaiden’s skin 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.
“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 retired government worker husband, Tim, 56, are now raising funds to take Jaiden to Italy for treatment to help slow the spread of the disease before it crushes his chest.
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.
“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. 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.
“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.
“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.”
Donate here: https://www.gofundme.com/f/treatmentforjaiden