Jaiden Rogers, a 12-year-old boy from Alamosa, Colorado, United States, has been suffering from a rare disease that stiffens his skin so hard that it’s almost like a stone.
Speaking to PEOPLE, his mother, Natalie Rogers said 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 through 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.