A Colorado family is reaching out to the public for help in treating their son’s rare, debilitating skin condition. For seven years, 15-year-old Jaiden Rogers has suffered from stiff skin syndrome, a disease that causes the skin to harden. With no cure for the disease, Rogers and his family are now banking on an experimental procedure to save his life.
Rogers was diagnosed with the disease in 2013 when his mother, Natalie Rogers, found a patch of hard skin on his thigh. At first, she said, the family didn’t think anything of it, but they took him to a doctor to be safe.
Photo: YouTube
“[A]fter some tests, the doctor called me and told me to sit down,” Natalie said, according to the Sun. “That isn’t what you want to hear from a doctor.”
Doctors informed Jaiden’s parents that he had an incredibly rare skin condition known as stiff skin syndrome. According to the boy’s genetic physician, Dr. Margarita Saenz, his is one of only 54 cases ever reported in the world.
“Stiff skin syndrome is a slowly progressing connective tissue disorder,” said Saenz. “The dangerous part is if this spreads across the chest cavity — that could impact the ability to breathe.”
“I’d never heard of the condition before and most doctors haven’t heard of it so I didn’t think much of it until they continued telling me what to do,” his mother said.
After he was diagnosed, Jaiden’s disease began to progress rapidly, spreading throughout his body.
“Within three months it had really started spreading down his leg and he needed a wheelchair,” Natalie said. “It was horrible and he was in severe pain.”
Today, Jaiden remains confined to a wheelchair and takes chemotherapy to slow the progression. However, the condition has since spread to his stomach, chest, and neck, making it difficult for him to breathe.
“If he doesn’t get treatment, doctors say he’ll become entombed in his own body,” said Jaiden’s mom. “His whole body is turning to stone because this disease starts from the inside and works it way to the skin.”
While Dr. Saenz noted that no cure yet exists for the condition, Jaiden’s family have set their sights on an experimental treatment reportedly being developed in Italy.
“Once he has treatment to stop the progression of the disease, he’ll be able to have therapy to loosen the skin,” Natalie said.
The embattled mother says the last ditch effort may be Jaiden’s only hope for living a long, full life.
“He’ll always be in a wheelchair and we can’t change that, but we need to get him to Italy so we can at least prolong his life,” she said. “Basically, if we don’t get him there, he won’t live.”
The family has started a GoFundMe page to raise money for the experimental treatment. The fund’s $1.5 million goal includes $125,000 for a medical flight to Europe, reports the Denver Post. The family has currently raised just over $350,000.
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Stiff Skin Syndrome — Sources
The Denver Post
GoFundMe
The Sun