Fewer 50 cases in the world: Colorado boy 'petrified' due to rare disease

A bedridden 14-year-old from Colorado suffers from a rare disease that is slowly causing his skin to harden. According to the mother, the son is only getting worse - the boy is imprisoned in his own body, turning into “stone.”

Photo: video frame People

The family of an 14-year-old boy hopes to find a cure for a rare disease that causes the hardening of his entire body, writes People.

In January 2013, Jaden Rogers was diagnosed with fascial dystrophy, or hard skin syndrome, an extremely rare disease that thickens his skin and essentially turns his body into stone.

"It's like knocking on a table," said foster mother Natalie Rogers, 53. “He was trapped in his own body.”

The disease first started in the thigh area and quickly affected the boy's hips, abdomen, back and chest, causing unbearable pain in the joints and muscles. To date, the disease has spread throughout the teenager’s body and Jaden has serious breathing problems.

The six-year history of the fight against the disease was filled, more likely, with falls than with ups. In March of this year, Jaden was introduced into an artificial coma: tough skin squeezed his chest wall to such an extent that he could not breathe on his own.

Since then, the boy has gotten much worse, his mother says. He sleeps about 20 hours a day, takes three strong painkillers and spends most of his time in bed wearing a respirator. When Jayden isn't sleeping, he can watch TV shows and play on the computer, two things that still make him happy.

Photo: video frame People

Medical bills are piling up and the family knows there is no treatment available. Specialized stem cell therapy specifically for rare skin conditions is being done in Europe - and Rogers wants to try it. The problem is that it costs a million dollars. London doctors received a grant for treatment, but the family still has to pay about 400 thousand dollars. Currently on the page GoFundMe fundraising going on.

“This is the only chance to save our boy,” says Natalie. It's unbearable to look at him. We're running out of time. It's only getting worse."

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Along with savings for possible treatment, expenses include a four-hour trip once a month to the Colorado Children's Hospital in Denver, where the family stops for a few days and meets with doctors working on the Jaden case.

The family is also trying to move from Colorado to Georgia, to a lower altitude region that could help the boy's lungs and buy him time.

According to Dr. Margarita Saens, a clinical geneticist at the Colorado Children's Hospital that treats Jaden, the first case of this syndrome was reported in 1971. Since then, only a few dozen cases have been recorded in the world.

“What happens is almost a scarring, fibrotic change in the skin itself,” says Saenz.

Jaden's life was complicated from the start. He was born to a single mother and was adopted by Natalie and Tim Rogers.

“The first few years we taught him how to talk, play and just try to be a family,” Natalie said.

Photo: video frame People

In 5 years, Jaden was diagnosed with autism, which limited his ability to communicate. Only a year later, Tim first discovered a spot on Jaden's right thigh. A biopsy later revealed his incredible diagnosis.

“We were so confused at first,” Tim said. “We couldn’t believe there were no answers because it’s a very rare disease.” We couldn't find anyone who had experienced this."

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“We mortgaged our house three times,” Natalie told PEOPLE in 2018, “and used Tim’s retirement savings. There's nothing more we can do."

Photo: video frame People

Natalie herself also has a serious health condition - in 2016 she was diagnosed with Friedrich's ataxia, a degenerative and potentially fatal neuromuscular disorder that causes decreased muscle control and coordination.

In the next two years, she needs a heart transplant, but so far the adoptive mother is focused on her child.

“I know I have to take care of myself, but he is our first priority,” she says. “Jaden is our everything.”

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