A Colorado mother is searching for answers as her 10-year-old son suffers from a rare and perplexing skin disease that is causing his skin to entomb his body.
Jaiden Rogers, 10, is suffering from stiff skin syndrome. You may not have heard of it, but that’s because there have only ever been 43 reported cases. Jaiden is number 41.
Four years ago, Jaiden found a small spot of hardened skin on his leg. He said it “felt like stone.” His mother, Natalie Rogers, believed the spot was from "growing pains" and that it would go away.
The spot didn’t go away, and Jaiden wound up in a wheelchair only months after seeing a dermatologist.
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Natalie says the hardened skin has spread to his stomach area, his pubic area, his hips and his neck.
“It’s hard to explain to a child what’s going on when you actually don’t know what’s going on,” Natalie told KOAA.
Stiff skin syndrome is a condition in which the skin hardens and makes it difficult to move. The condition has even caused Jaiden some difficulty breathing.
Dr. Lisa Swanson, Jaiden’s dermatologist, said there is currently no cure for the disease, but that there is generally a “stopping point.” But that stopping point is different in every case.
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Unfortunately, Jaiden has yet to hit his stopping point. His doctors have reportedly never seen such an aggressive spread of the condition. Natalie says that she is just fighting to keep his quality of life up.
“It makes me frustrated, and yes, you get angry, and I cry a lot,” she said. “I spend a lot of time on the Internet every day trying to figure out what my next step is.”
For now, while doctors continue to figure out how to help Jaiden, he continues to be a fairly normal 10-year-old boy. His mother says he loves Star Wars, the Denver Broncos and watching funny videos of horses online.
The family has created a YouCaring page to help raise funds to help get Jaiden a service dog, make their entire home wheelchair accessible, and continue treatment through chemotherapy and other methods.