Boy In Colorado Diagnosed With Super Rare Stiff Skin Syndrome

12-year-old boy diagnosed with stiff skin syndrome, family looks for cure

Jaiden is 12 and is suffering with stiff skin syndrome. It causes the connective tissue that causes the the skin to harden and makes muscles difficult to move. 

He was diagnosed in 2013 after his father found a hard lump on the child’s thigh, Fox News reported.

It has spread from his thighs, attacking his hips, stomach and back. It’s now moving to Jaiden’s chest, making it difficult to breathe, People reported.

“His skin is basically like stone,” Jaiden’s mother Natalie Rogers, told People. “It’s like tapping on a countertop.”

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The disease is so rare that only 42 people in the world had been diagnosed as of 2015, according to the National Institutes of Health.

NIH says there are no specific therapies to reverse stiff skin syndrome, but treatment may include physical therapy to help with joint movement.

Stiff skin syndrome, according to the NIH, happens when the FBN1 gene mutates. It is inherited trait. A diagnosis is confirmed by genetic testing.

Jaiden’s family drives him to Children’s Hospital Colorado in Denver, a four-hour trip, every month to meet with doctors who are trying to help the boy. He is also on chemotherapy to slow the disease, all the while taking pain medications, People reported.

The family has set up a GoFundMe account to help pay for Jaiden’s treatments and the other expenses that come with the rare disease. 

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