After a rare disease that is causing his entire body to harden, one 14-year-old boy’s family is racing against the clock to find a cure for a rare disease.
Back in January of 2013, Jaiden Rogers was diagnosed with a extremely rare disease named stiff skin syndrome which thickens his skin and essentially causes his body to turn into stone.
“It’s like tapping on a countertop,” his mother Natalie Rogers, 53, shared. “He’s becoming entombed within himself.”
The disease first began in his thigh which then spread through his hips, stomach, back and chest — causing unbearable joint and muscle pain. While it spreads throughout his entire body, Jaiden is fighting severe breathing issues.
In March, Jaiden was put in an induced coma as the stiff skin was compressing his chest wall to the point where he had trouble breathing on his own.
Jaiden has since regressed, sleeping 20 hours a day, taking three strong pain medications while spending most of the time on in bed on a respirator.
When Jaiden is awake, he watched The Twilight Zone and plays on the computer.
But while the medical bills pile up, the family understands there is no cure. That being said, in Europe there is a special stem cell treatment specifically for rare skin diseases — and the Rogers want to make it happen for Jaiden.
The family stresses that it costs a million dollars. Doctors in London have been given a grant but the Rogers need to come up with $400,000.
“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.”
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 diligently on Jaiden’s case.
And due to the high altitude of 7,500 feet, the family is additionally attempting to relocate to Georgia, where a lower elevation may 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.”
A clinical geneticist at Children’s Hospital Colorado, Dr. Margarita Saenz, who treats Jaiden, shares that the first case of the syndrome was reported in 1971.
And only a few dozen people around the world since then have been diagnosed.
“What’s happening is almost a scarring — a fibrotic change to the skin itself,” Dr. Saenz shared.
Born to a single mom, Heather, Jaiden’s life did not begin simply. Years later, he was adopted by Natalie and Tim.
When the Rogers learned that Heather’s sister was having trouble taking care of 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 shared.
When Jaiden was 5, he was diagnosed with autism, which limits his ability to have conversations with others. One year later, Tim first felt a hard spot on Jaiden’s right thigh. Biopsy results later revealed what a harrowing 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.”
“We’ve taken out three mortgages on our home,” Natalie shared with PEOPLE in 2018, “and have spent Tim’s retirement. There is nothing else we can do.”
In addition, Natalie also faced her own slew of health problems. In 2016 she was faced with Friedrich’s Ataxia, a degenerative and potentially fatal neuromuscular disorder that causes a decline in muscle control and coordination.
Natalie also found that she now needs a heart transplant within the next two years but she is still focusing on her child.
“I know I need to take care of myself, but he’s our main priority,” she says. “Jaiden is our everything.”
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