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Bedridden Teen Suffers from Rare Disease Turning Him Into Stone: 'It's Only Getting Worse'

Caitlin Keating
Bedridden Teen Suffers from Rare Disease Turning Him Into Stone: 'It's Only Getting Worse'

A 14-year-old Colorado boy‘s family is in a race against time to find a cure for a rare disease that is causing his entire body to harden.

In January 2013, Jaiden Rogers was diagnosed with stiff skin syndrome, an extremely rare disease that is thickening his skin and essentially causing his body to turn into stone.

“It’s like tapping on a countertop,” his mother Natalie Rogers, 53, first told PEOPLE from their Alamosa home in 2018. “He’s becoming entombed within himself.”

The disease first started in his thigh and has quickly made its way through his hips, stomach, back and chest — causing unbearable joint and muscle pain. Now, as it spreads throughout his entire body, Jaiden is battling severe breathing issues.

The six-year road has been filled with more downs than ups. In March, Jaiden was put in an induced coma because the stiff skin was compressing his chest wall, to the point where he couldn’t breathe on his own.

Bedridden Jaiden has regressed ever since “getting over that hurdle,” Natalie tells PEOPLE. He sleeps about 20 hours a day, takes three strong pain medications and spends most of the time in bed on a respirator, she says. When Jaiden is awake, he’s able to watch The Twilight Zone and play on the computer — two things he used to be able to enjoy more often.

Natalie and Jaiden Rogers | Courtesy Rogers Family

 

As the medical bills pile up, the family knows there is no cure. But in Europe, there is a special stem cell treatment specifically for rare skin diseases — and the Rogers want to try it.

The problem, the family stresses, is that it costs a million dollars. Doctors in London have been given a grant, says Natalie, but the Rogers need to come up with $400,000. On their GoFundMe page, they count as every dollar comes in.

“This is our only shot to save our boy,” says Natalie. “Watching him like this is unbearable. We are running out of time. It’s only getting worse.”

Along with saving for a possible treatment, Natalie and Tim’s expenses also include making the four-hour drive once a month to Children’s Hospital Colorado in Denver, where they stay for a few days and meet with doctors who are working on Jaiden’s case.

Because of the high altitude of 7,500 feet, the family is also trying to relocate to Georgia, where a lower elevation might help his lungs — and buy him more time.

“We’re trying to do anything that could possibly help,” says Natalie. “Leaving Colorado might be a short-term answer.”

According to Dr. Margarita Saenz, a clinical geneticist at Children’s Hospital Colorado who treats Jaiden, the first case of the syndrome was reported in 1971. Since then, only a few dozen people around the world have been diagnosed.

“What’s happening is almost a scarring — a fibrotic change to the skin itself,” Dr. Saenz tells PEOPLE.

A Rough Journey from the Beginning

Jaiden’s life has been challenging since the start. He was born to a single mom, the older sister of one of the two children — Heather, now 30, and Ilysa, now 28 — that Natalie and Tim adopted years earlier.

When the Rogers learned that Heather’s sister was struggling to care for Jaiden, then 2, they became his legal guardians.

“We spent the first few years teaching him how to speak, playing with him, and just trying to be a family,” Natalie told PEOPLE last year.

At age 5, Jaiden was diagnosed with autism, which limits his ability to have conversations with others. It was just one year later that Tim first felt a hard spot on Jaiden’s right thigh. Biopsy results later revealed his unimaginable diagnosis.

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

 

Tim and Jaiden Rogers, before the boy became bedridden | Courtesy Rogers Family

“We’ve taken out three mortgages on our home,” Natalie told PEOPLE in 2018, “and have spent Tim’s retirement. There is nothing else we can do.”

Adding to their challenges are Natalie’s own health issues. In 2016, she was diagnosed with Friedrich’s Ataxia, a degenerative and potentially fatal neuromuscular disorder that causes a decline in muscle control and coordination.

Natalie recently found out that she now needs a heart transplant within the next two years, but she’s still focusing on her boy.

“I know I need to take care of myself, but he’s our main priority,” she says. “Jaiden is our everything.”