‘It’s like tapping on a countertop.’ 12-year-old boy’s skin is turning hard like stone

For nearly half of the 12 years that Jaiden Rogers has been alive, his skin has been slowly hardening, stiffening, thickening, losing its elasticity to the point where it doesn’t feel soft anymore like skin is supposed to feel. It feels like stone.

This is how his mother, Natalie Rogers, described Jaiden’s skin to People magazine: “It’s like tapping on a countertop.”

Six years ago Jaiden, who lives in Alamosa, Colorado, was diagnosed with stiff skin syndrome, a disease that doctors say has afflicted only a few dozen people around the world since the first case was reported in 1971.

“People don’t get it, mainly because people don’t know what it is, no one has ever heard of it,” Jaiden’s father, Tim Rogers, told KDVR in Denver earlier this year.

In Jaiden’s case, the disease has restricted his breathing to the point where he uses a respirator. It’s immobilized him to the point where he is in a wheelchair. And it’s causing him great pain, his family says.

The GoFundMe page raising money for Jaiden’s medical expenses, created by his mother, puts it bluntly and emphatically: “JAIDEN IS SLOWLY TURNING TO STONE!”

“Jaiden understands that he is sick as much as a 12 year old boy can, although he cannot fully grasp the intent of the sinister syndrome branching out just beneath his skin,” his GoFundMe story says.

What’s happening to Jaiden “is almost a scarring — a fibrotic change to the skin itself,” clinical geneticist Margarita Saenz, who treats him at Children’s Hospital Colorado in Aurora, told People.

Stiff skin syndrome, caused by a genetic mutation, is a connective tissue disorder that turns the skin on the entire body hard and thick, according to the Genetic and Rare Disease Information Center.

It typically shows up in infancy or early childhood, according to research published by the Journal of the American Medical Association.

As the skin progressively hardens, a person becomes less mobile as their joints - usually larger ones including the shoulders, elbows and knees - get stuck in a bent position.

Physical therapy can improve or maintain joint movement - Jaiden endures painful therapy three times a week, the GoFundMe page says - but there is no known cure or treatment. Jaiden’s doctors have him on chemo in a bid to slow the disease, according to his family.

“He’s very outgoing,” Rogers told “Good Morning America” earlier this year. But “he’s on so many meds, most of the time he’s tired and strung out.”

Dermatologist Elizabeth Swanson told KDVR that she had “exhausted the medical library” trying to come up with a treatment for Jaiden.

“The unfortunate thing with stiff skin syndrome is that once the skin has done this, that area is done,” Swanson told the TV station.. “We’re not going to be able to bring back normal skin to that area. But what I am hopeful of is this treatment helps prevent the spread of it and holds it in its tracks. That’s a win.”

Symptoms become worse as the patients get older and the disease progresses, according to GARD.

The disease is not fatal, but it can impair a patient’s breathing when the skin around the chest hardens, and that’s already happened to Jaiden.

Life had not been kind to him before Natalie and her husband, Tim, came into his life, the GoFundMe page explains.

The couple had already adopted a daughter and son when they could not have children of their own. When Jaiden’s birth mother signed over legal guardianship to them, they found him in a house in remote Georgia, neglected and malnourished, “huddled next to his filthy car seat. He was even once observed eating dog food out of a dog dish because he hadn’t been fed,” says his GoFundMe story.

“For the first year they had Jaiden, he used to sneak into the (Rogers’) bedroom in the middle of the night and feel their faces to make sure they were still there, then go back to bed.

“What neither Jaiden nor his new family could have known then was the only thing more horrifying than the first chapter of Jaiden’s life would be the second chapter.”

Six years ago Tim Rogers noticed a small lump on Jaiden’s right thigh, a lump that got bigger and spread very quickly across his hips, stomach and back, to his left leg and both arms.

“It was as if the skin on his right leg was an 1/8 of an inch thick with something very hard underneath, like stone,” Rogers told People. “It felt like tapping on a countertop.”

They had never heard of stiff skin syndrome before Jaiden was diagnosed with it.

“We were so confused at first,” Tim Rogers told People. “We couldn’t believe there were no answers because it’s so rare. We couldn’t find anyone else who had it.”

At this point, Jaiden’s parents feel they have tried everything available to them in the United States to help Jaiden.

Having spent more than $500,000 of their retirement money and mortgaged their home, they’re trying to raise enough money to take him to Europe to try stem cell treatments available there.

it’s a beat the clock effort at this point as they try to stop the disease from causing total paralysis when Jaiden, his mother fears, becomes “emtombed inside himself.”

This story was originally published August 1, 2018 at 9:33 AM with the headline "‘It’s like tapping on a countertop.’ 12-year-old boy’s skin is turning hard like stone."