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.
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.