Parents of a Boy Battling a Rare, Debilitating Skin Disease Are Raising Money to Save His Life
A 12-year-old from Colorado named Jaiden Rogers is suffering from a rare condition called stiff skin syndrome. His family says he may be the only person in the world who has it and it's "turning him to stone."
A 12-year-old boy from Colorado named Jaiden Rogers is battling a rare, debilitating skin disease. "He was a child born into a family that severely neglected him," his mother, Natalie Rogers, tells Parents.com. "We [adopted] him at the age of 2. Jaiden has several disabilities, then the shocker came when he was 6, when he was diagnosed with stiff skin syndrome." Also called congenital fascial dystrophy, the condition leaves the skin thick and stone-like to the touch, leading to weak muscles, terrible pain, and immobility.
According to the family's GoFundMe page, Jaiden's dad Tim noticed a small lump on his son's right thigh just underneath his skin. "It was as if the skin on his right leg was an 1/8 of an inch thick with something very hard underneath, like stone," Tim notes. "It felt like tapping on a countertop."
He took Jaiden to a dermatologist who told them to keep an eye on it, but this year the lump has gotten bigger, wrapping around the boy's right thigh and behind his knee. Once the calcifications invaded the joint, Jaiden began to lose mobility. It was after undergoing a biopsy that he was diagnosed with stiff skin syndrome and became only the 41st documented case ever in the world.
The condition spread to Jaiden's left leg, both hips, his buttocks, and his arms. He now uses a wheelchair and is no longer able to attend school with his friends.
"Jaiden is still on a chemo medicine that does help slow it and 10 different meds a day, including three very strong pain meds," Natalie tells Parents.com. "This syndrome is very painful! If you think about being entombed within yourself. He screams during and after physical therapy and wakes up several times a week during the night screaming. It is just awful. When he is in pain, you can count on him throwing up. We don’t get much sleep around here."
All in all, the Rogers have spent $500K of their own retirement money and mortgaged their house for Jaiden's care, but believe they've exhausted all viable options in the U.S. "People don’t understand how much money that we have had to spend for medical over the last six years," Natalie says. "There is no way we can pay for Jaiden’s treatment." They are now aiming to try a special stem cell treatment that's only available in Europe. To that end, they estimate they'll need $1.5 million for the treatment and their stay in Europe. The Rogers are asking people to donate what they can in the form of money, hotel points, or frequent flyer points.
Without this treatment, Jaiden's condition will only continue to progress. But the Rogers say Jaiden is "a survivor." With hope, they'll receive the funds they need to get their beloved son the relief and care he deserves.