12-year-old will soon be 'entombed within himself' as rare medical disorder turns his skin into stone
Although 12-year-old Jaiden Rogers looks pretty normal for a boy in his preteens, his mother recently revealed how the young boy only wishes he could be as 'normal' as the other kids around him. In an interview with People magazine, Jaiden's parents Natalie and Tim Rogers spoke about their child's rare health condition.
Six years ago, Natalie and Tim found out that their son had been diagnosed with stiff skin syndrome, which is basically an extremely rare disease that slowly causes the entire body to harden. “His skin is basically like stone,” says Natalie. “It’s like tapping on a countertop.”
The disease, which started with his thighs before moving on to other body parts of his body like his hips, stomach, and back, usually causes a lot of unbearable joint and muscle pain. However, now that the medical condition is reaching his chest area, Jaiden is also having trouble breathing.
While skin hardening is not fatal by itself, the rare condition may, after a point, start restricting his chest and lung cavities, eventually leaving him unable to breathe properly. And because neither the doctors nor his parents can reverse the damage that has already been done to Jaiden's body, all of them are determined to stop the disease from progressing before Jaiden “becomes entombed within himself.”
As per Dr. Margarita Saenza, who is a clinical geneticist at Children’s Hospital Colorado and also Jaiden's doctor, the first instance of Jaiden's medical condition can be traced back to 1971. Ever since then, only a handful of cases have been registered and diagnosed in hospitals around the world. “What’s happening is almost a scarring — a fibrotic change to the skin itself,” Dr. Saenz told the publication.
This wasn't the only challenging situation that Jaiden had to face growing up. Jaiden was initially born to a single mom Ilysa. When her parents Tim and Natalie found that she was struggling to care for Jaiden, they decided to become his legal guardians as well. “We spent the first few years teaching him how to speak, playing with him, and just trying to be a family,” says Natalie.
At the tender age of five, Jaiden was diagnosed with autism, and only a year later, Tim found a hard spot on Jaiden’s right thigh, which biopsy revealed to be quite an unimaginable diagnosis. “We were so confused at first,” said Tim. “We couldn’t believe there were no answers because it’s so rare. We couldn’t find anyone else who had it.”
Jaiden's family is currently racing against time, trying to find a treatment that works for their son. And in order to catch up with the huge mound of medical bills that come with Jaiden's treatment, the family has created a GoFundMe page for their son's benefit, asking for help from people over the globe so that they can cover the ever-increasing medical bills. “We’ve taken out three mortgages on our home,” said Natalie, “and have spent Tim’s retirement. There is nothing else we can do.”
On the other hand, Natalie, who herself struggles with Friedrich’s Ataxia, which is essentially a degenerative and potentially fatal neuromuscular disorder that causes a decline in muscle control and coordination, also spoke about how she sometimes has to take a step back while caring for her child. “It gets hard sometimes to care for Jaiden when I’m having to take care of myself,” said Natalie. “That’s where Tim comes in and takes over.”
However, despite all the troubles and sacrifices that Tim and Natalie have to make, the couple is still quite hopeful of their little boy's future, and have ample belief that he even 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.”