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Family of boy ‘turning into stone’ from rare condition is desperate for a miracle

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DENVER – A Colorado family says they are running out of time and options to help their son who suffers from a debilitating and rare skin condition.

Jaiden Rogers has congenital fascial dystrophy, also known as stiff skin syndrome, which leaves the skin thick and stone-like to the touch. "It hurts," said Jaiden, who was diagnosed six years ago.

"Right now, as far as we know, Jaiden is the only one in the world who has it," Jaiden's mother Natalie told 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."

Jaiden and his family are desperate for a miracle. They say they have only one option left, traveling out of the country to seek treatment for Jaiden.

"It gets hard after a while," Natalie said, adding that her boy is the only thing that keeps her going.

The family tried chemotherapy in an effort to stop the spread, but Jaiden's symptoms got worse. Now he needs oxygen to help him breath.

Natalie said they are currently exploring stem cell options with a doctor in Italy, but the cost could easily reach $100,000, according to KDVR.

"We've kind of run out of money," Natalie said. "It's gone."

But with Jaiden still smiling and happy in the face of such a difficult outlook, Natalie said she promises "to fight until the end."

They have established a GoFundMe page to raise money for his medical and travel expenses, and the family said any airline points are also welcome.

 

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