A 10-year-old Colorado boy, Jaiden Rogers, suffers from a strange condition that will eventually turn his skin into “stone,” and now his parents are desperate for answers and are seeking help for their son’s rare condition. As reported by ABC News, Jaiden was diagnosed with stiff-skin syndrome, also known as Congenital fascial dystrophy, when he was just 7 years old. Three years later, the disease has covered so much of his body in rock-like lesions that he is now on oxygen and unable to go to school.
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According to the National Center for Advancing Translational Sciences, Stiff skin syndrome (SSS) is a rare condition characterized by hard, thick skin (usually on the entire body), which limits joint mobility and causes flexion contractures (when joints are stuck in a bent position). The condition could leave Jaiden essentially “locked” in his body. Not much is known about it, cause or treatment, as it has only been reported about 40 times throughout history.
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When Jaiden was first diagnosed, his mobility was good, but the progression of the disease has unfortunately been stronger than most cases, Huffington Post wrote. Many people with Stiff Skin syndrome are able to remain ambulatory until adulthood, but Jaiden now must use a wheelchair regularly. He will have good days and can still walk short distances, but overall a wheelchair is required for him to get around.
Natalie and Tim Rogers are Jaiden’s legal guardians and they are currently in a fight against time to come up with a cure for this horrible condition that is making life so difficult for their son.
“It started as small little patch and it spread all over,” Natalie Rogers told ABC News. “They’re trying to slow it down as much as it can, until we can find something.”
Rogers explained that three years ago she and her husband noticed something wasn’t right and they discovered that some spots on his skin were starting to harden. Those patches began to spread, and Jaiden was soon diagnosed with stiff-skin syndrome.
“It’s like little marbles and some of it is flat and hard,” she said.”Literally, it’s turning him to stone; he’ll be entombed in himself if we can’t find something. It’s almost like if you took your finger and tapped on his arm, it’s almost like tapping on a counter top, on a hard surface. That’s what it feels like,” Rogers added.
Although the disease does not affect vital organs, the boy will be completely locked inside his body in a matter of years. The situation is so urgent that Jaiden is now having trouble breathing as a result of the skin around his chest tightening. Last summer he began using an oxygen tank, and soon after he stopped going to school because the medicine he’s taking left him so drowsy that he would drift into sleep during class and topple out of his wheelchair.
The boy’s doctors did not respond to ABC News‘ request for comment, but the NIH says there is no proven treatment. However, regular exercise and physical therapy can help patients maintain movement, according to its website.
For now, doctors were able to slow the progression of the condition with a treatment of chemotherapy as if it were a cancer, but the body parts that are already rigid will no longer have the same flexibility again. The parents of Jaiden, who adopted him when he was 2 years old, began a campaign through the site YouCaring.org to raise funds to cover the costs of his treatment.
[Image via screenshot]