A family in Colorado is hoping for a miracle that could save their son who is running out of time. Jaiden Rogers suffers from a debilitating and rare skin condition called congenital fascial dystrophy, also known as stiff skin syndrome. The rare condition leaves the skin thick and stone-like to the touch and is painful. Jaiden, who was first diagnosed six years ago says, "It hurts."
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The debilitating disease is so rare that Jaiden's mother Natalie said her son is the only boy who has it in the world. "Right now, as far as we know, Jaiden is the only one in the world who has it," Natalie said in an interview with KDVR. "It actually started as a little spot on his right thigh, and now in five, six years it's gone down his legs (and) around his hips – it's kind of like a belt, he says."
With no known treatment for the extremely rare condition, Jaiden and his family are desperate for help and sadly it will take nothing short of a miracle to treat. Their last hope is to travel overseas to seek help in other countries that could have treatments not available in the U.S. "It gets hard after a while," Jaiden's mother said, noting that her boy is the only thing that keeps her going.
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The family has exhausted all known possible treatment options which even included chemotherapy to stop the spread of the symptoms but they only got worse. Now, Jaiden needs an oxygen mask in order to breathe. One barrier to overseas treatment is cost. Natalie said they are exploring the possibility of seeking treatment from a stem cell doctor in Italy. The only problem is the treatment costs $100,000.
Natalie added, "We've kind of run out of money. It's gone." Despite his desperate circumstance, Jaiden remains smiling and happy. Natalie added that she has promised her son "to fight until the end." The family has turned to support from their communities and setup <a href="https://www.gofundme.com/treatment%20for%20jaiden">a GoFundMe page here.</a>
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