12-Year-Old's Rare Disease Is Turning Him to Stone: He'll Be 'Entombed Within Himself,' Says Mom
On a hot summer day in late June, Jaiden Rogers looks like every other 12-year-old boy avoiding the blistering heat. Sitting on a chair in the living room of his Alamosa, Colorado, home, he watches The Twilight Zone and then plays on the computer in his Harry Potter-themed bedroom.
But he only wishes that he could actually be like other boys his age, his mother Natalie Rogers tells PEOPLE in this week’s issue.
That’s because six years ago, in January 2013, Jaiden was diagnosed with stiff skin syndrome — an extremely rare disease that slowly causes his entire body to harden.
“His skin is basically like stone,” says Natalie, 51. “It’s like tapping on a countertop.”
The disease first started in his thigh and has quickly made its way though his hips, stomach and back — causing unbearable joint and muscle pain. Now, as it spreads to his chest area, Jaiden is also battling breathing issues.
While the hardening of the skin isn’t fatal in itself, doctors say it could restrict his chest and lung cavity, eventually leaving him unable to breathe. Because the damage that has already been done to his body is irreversible, Natalie and her husband, Tim Rogers, are determined to stop the disease from progressing before Jaiden “becomes entombed within himself.”
According to Dr. Margarita Saenza, 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.
Unfortunately, Jaiden’s life has been challenging from the beginning. He was born to a single mom, the older sister of one of the two children — Heather, now 29, and Ilysa, now 27 — 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.
• For much more on the Jaiden Rogers story, pick up this week’s issue of PEOPLE, on newsstands Friday.
“We spent the first few years teaching him how to speak, playing with him, and just trying to be a family,” says Natalie.
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,” says Tim. “We couldn’t believe there were no answers because it’s so rare. We couldn’t find anyone else who had it.”
The family is now in a race against time to find a treatment that could potentially cure their little boy. And with mounting medical bills — which are only getting higher every month — they’ve created a GoFundMe page to help.
Their expenses also include making a 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.
“We’ve taken out three mortgages on our home,” says Natalie, “and have spent Tim’s retirement. There is nothing else we can do.”
Watch the full episode of People Features: The Little Boy Turning Into Stone, streaming now on PeopleTV.com, or download the PeopleTV app on your favorite device.
Jaiden is also undergoing chemotherapy, which has helped slow the progression of his disease and takes strong pain medications throughout the day, which cause him to sleep for up to 18 hours.
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.
“It gets hard sometimes to care for Jaiden when I’m having to take care of myself,” says Natalie, who is a stay at home mom. “That’s where Tim comes in and takes over.”
While Jaiden’s future is filled with unknowns, both Natalie and Tim are still hopeful that he has one.
“You do whatever you have to do,” says Tim. “We won’t stop trying. One way or another, we’ll do what’s best for Jaiden.”