A 14-year-old Colorado boy’s family is in a race against the clock to discover a cure for a rare disease that apparently causes the body to freeze. The condition is so rare that only 43 people have it in the entire world.
In January 2013, Jaiden Rogers was diagnosed with stiff skin syndrome, an extremely rare disease that thickens his skin and essentially causes his body to turn into stone.
“It’s like tapping on a countertop,” his mother Natalie Rogers, said in 2018. “He’s becoming entombed within himself.”
There were more downs than ups on the six years since his diagnosis. In March, Jaiden was put in an induced coma because his stiff skin compressed his chest wall to the point where he could not breathe on his own.
Medical bills are piling up and the family knows that there is currently no cure for their boy. But in Europe, there is unique stem cell therapy specifically for unusual skin diseases — and Rogers wants to try it out.
The problem, the family insists, is that it costs a million dollars. Doctors in London have received a grant, Natalie suggests, but Rogers still needs $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.”
In addition to saving for feasible therapy, Natalie and Tim also have to pay for a four-hour ride once a month to Children’s Hospital Colorado in Denver, where they remain for a few days and meet with physicians dealing with Jaiden’s situation.
“What’s happening is almost a scarring — a fibrotic change to the skin itself,” Dr. Saenz, a clinical geneticist at Children’s Hospital Colorado who treats Jaiden, said.