Boy suffering from rare condition turning skin to 'stone'
Desperate parents are pleading for help, after their son was diagnosed with a rare condition where his skin turns to ‘stone’.
According to their Go Fund Me page, the parents have already exhausted over $677,000 (AUD) of their own retirement money and have mortgaged their home to finance his medical fees.
Jaiden Rogers, a 12-year-old boy from Alamosa, Colorado, suffers from ‘Stiff Skin Syndrome’ and he is one of only 41 documented cases in the world. ‘Stiff Skin Syndrome’ is a rare and rapidly progressing connective tissue disorder that turns skin hard like stone.
Faced with extreme medical costs his parents have started a fundraising campaign to fund a year of special stem cell treatment in Europe.
Jaiden was adopted in 2005, when his American parents took over guardianship from his birth mother.
According to a Go Fund Me page, started by his mother Natalie Rogers, they first realised that something was wrong six years ago when father Tim Rogers noticed a “small lump on Jaiden’s right thigh just underneath his skin”.
After consulting a dermatologist, the parents were dismayed to realise that the lump kept growing.
“In a matter of weeks, the growth had wrapped around Jaiden’s right thigh and behind his knee. Once the hard calcifications invaded the joint, Jaiden began to lose mobility,” the Go Fund Me page said.
Only 41 cases of Stiff Skin Syndrome diagnosed
In 2013, the family took Jaiden to Texas Tech Medical Center for a biopsy and he was diagnosed with ‘Stiff Skin Syndrome’.
Stiff Skin Syndrome is a very rare condition discovered in the early 1970s. It is a connective tissue disorder where the skin begins to harden and thicken, and it can spread over the whole body.
“His skin is basically like stone,” his mother Natalie told People Magazine.
“It’s like tapping on a countertop,” she said.
The condition can cause limited joint mobility, weak muscles and pain. Very little is known about the condition, including the cause or treatment and has only been recorded 41 times in the past.
“Jaiden is the 41st documented case ever in the world, and the only one in the world right now, as far as we know,” the page said.
“Nobody is really looking at it because there’s just not a lot of people that have it in the world,” Tim Rogers, Jaiden’s father told 4KMOV.
“So, we reach out to doctors all over the place. Maybe there’s a medication that’s being used for something else that can be used for Jaiden to try, to at least try,” he said.
“Worst case scenario – it could be fatal. But it could also be total immobility,” Tim said.
Spots appearing on the spine
“Jaiden’s doctors acknowledged that, they’d never seen such aggressive spread of the syndrome. In a month, it spread to Jaiden’s left leg, both hips, buttocks, and his arms. Spots have recently appeared near his spine,” the page said.
“The once-hyperactive Jaiden is often confined to a wheelchair and no longer able to attend school with his friends,” the page said.
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According to People Magazine, Jaiden is undergoing chemotherapy to help slow the progression of his condition. He also takes strong pain medication which can cause him to sleep for up to 18 hours a day.
The couple aims to raise over $2 million to seek a year long course of special stem cell treatment for rare skin diseases in Europe.
According to their Go Fund Me page, the parents have exhausted over $677,000 of their own retirement money and have mortgaged their home. Presently, the Go Fund Me campaign has raised $150,000 of its $2 million goal.
