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Colorado family struggles to save son with rare syndrome: ‘Our boy is turning to stone’

It's called stiff skin syndrome
Posted at 11:40 AM, Oct 27, 2020
and last updated 2020-10-27 11:40:34-04

A Colorado family is reaching out to the public for help in treating their 15-year-old son’s rare and debilitating skin condition.

For seven years, Jaiden Rogers has suffered from stiff skin syndrome, a disease that causes the skin to harden.

“When they said it was stiff skin syndrome – I was like oh good it’s only that,” said Natalie, Jaiden’s mother. “But the doctor said, ‘oh no I don’t think you understand.’ They said his skin would turn to stone. Within a month, he was in a wheelchair. It spread so fast. Within just a few months, he was starting to get it everywhere.”

The condition has caused his skin to gradually tighten and harden, spreading from his legs to his hips and then to his stomach and neck.

It started as a growth behind his knee. Jaiden has since lost mobility. The syndrome is a painful one as the skin thickens, limiting joint mobility.

The syndrome is sparked by a mutation change, and an exact treatment is unknown.

With no cure for the disease, Rogers and his family are now banking on an experimental procedure to save his life.

“Doctors in Ireland are working with doctors in London. This is very expensive,” Natalie said. “The whole treatment is $1.5 million, because they actually have to make something for him, because he is the only child. It’s our only hope, and we are running out of time.”

Natalie says her son is “turning to stone,” leaving him unable to walk and sometimes giving him trouble breathing. He sees six doctors and takes chemotherapy drugs to slow the disease’s progression.

Jaiden is being treated at Children's Hospital in Aurora, Colorado. He may be the only one in the world being treated for what has been tabbed stiff skin syndrome. Altogether, there have only been a few dozen documented cases of the disease.

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.

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.