Skin condition turns Colo. boy to 'stone'

Posted at 7:40 AM, Feb 23, 2016
and last updated 2016-02-23 09:40:17-05

Relatives of an Alamosa, Colorado boy are searching for answers after they say he developed a rare skin condition that is "turning him to stone."

Jaiden Rogers was first diagnosed with so-called stiff-skin syndrome at age 7. Three years later, the disease covers so much of his body in rock-like lesions that he is on oxygen and unable to go to school.

Rogers' mother, Natalie Rogers, said they are searching and hoping for a doctor or treatment that can help Jaiden get better. She said doctors are even using chemotherapy medications in an effort to slow the growth of the lesions.

"It started as small little patch and it spread all over," Rogers told ABC News. "They’re trying to slow it down as much as it can, until we can find something."

Stiff-skin syndrome is a rare genetic disorder that leads to lesions with increased fibrotic tissue that can cause the hard or "rock-like" appearance. The disease can progress over time and cause mobility issues, especially over lower body joints, according to the National Institutes of Health.

Rogers, of Alamosa, Colorado, said the effect on Jaiden goes beyond dealing with the lesions across his body.

"He’s very outgoing," she said. But "he’s on so many meds, most of the time he’s tired and strung out."

The boy’s doctors did not respond to ABC News' request for comment, but the NIH says there is no proven treatment. Regular exercise and physical therapy can help patients maintain movement, according to its website.

There have been a host of different medications tested by doctors on the condition, including steroids, immune-suppressant drugs and light therapy but none has been proven to work effectively, according to the NIH.

Rogers said the lesions first appeared under the skin and then became more visible. "It’s like little marbles and some of it is flat and hard," she said.

She and her husband, Tim Rogers, are hoping that, by sharing Jaiden's story, they can find help for the disease, which is so rare it has only been reported in medical literature case reports from researchers.

The family is trying to raise funds on the YouCaring website, but is mostly looking for help treating the disease and slowing its progression.

"Literally, it’s turning him to stone; he’ll be entombed in himself if we can’t find something," Rogers said.