30 Jul Rare Condition Is Turning 12-Year-Old Boy To Stone And He Will Soon Become “Entombed Within Himself”

At just six years old, Jaiden Rogers was diagnosed with a rare medical condition that is slowly turning his skin to stone. Now 12, he shares this stiff skin syndrome with only 40 other people in the world.

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

Jaiden’s condition was discovered at the age of six when his father noticed a hard lump on his upper right thigh. This hardness has since spread to both legs and is moving up Jaiden’s hips, back and chest.

As the skin tightens around his torso, doctors fear his organs could become compressed. Jaiden is already on oxygen because his chest cavity has become constricted, making it difficult to breathe. He has also already lost significant mobility as the disease affects his joints and makes it painful to walk.

To discover what is currently known about stiff skin syndrome, check out the video below: 

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There is no known cure for Jaiden’s condition, and his parents are unsure whether the syndrome will be fatal or if Jaiden will lose all mobility but remain alive. For now, they are trying everything they can to fight the unusual condition.

“We were so confused at first,” Jaiden’s father Tim told People magazine. “We couldn’t believe there were no answers because it’s so rare. We couldn’t find anyone else who had it.”

Jaiden is currently undergoing chemotherapy and taking strong pain medication in an attempt to reverse the symptoms while doctors continue to search for a cure.

Searching for a cure to a condition that only 40 other people have reportedly had is difficult, and the Rogers family have spent all their savings and remortgaged their house in an attempt to keep their son alive.

Tim and Natalie already have to take Jaiden to the children’s hospital in Denver, Colorado, which is four hours from their home in Alamosa, every month to see his doctors and would like to be able to try costly experimental procedures, such as a type of stem cell transplant available in Europe that focuses on skin diseases.

“Money is in the way. We just want our boy to live. We’ve taken out three mortgages on our home and have spent Tim’s retirement. There is nothing else we can do,” said Natalie.

“We just keep plugging away and trying to find something. We do what we have to do,” added Tim.

Jaiden’s parents have started a GoFundMe campaign to help with Jaiden’s expenses before his skin entombs him within himself. The family wants to raise $1.5 million, which would be enough to take Jaiden to Europe for one year to receive new treatments.

The Rogers family is also accepting donations of air and hotel points. Without help to try and find a cure for Jaiden, his family has been left with nothing more to do but to slowly watch their son deteriorate.

Jaiden has already had a very difficult life. He was the third child that Tim and Natalie adopted from a broken home. Legal guardianship was signed over when Jaiden was two. Reportedly, he had fetal alcohol syndrome and was living in squalor.

He had been neglected and allegedly once ate dog food out of a dog’s dish because he had not been fed. After he was taken in by the Rogers family, Jaden would sneak into his parents’ bedroom just to ensure he had not been abandoned.

As if Jaiden’s start in life wasn’t hard enough, he now must face an uncertain future as he struggles with stiff skin syndrome. The condition, which is also known as congenital fascial dystrophy, is very rare and is characterized by a hardening and thickening of the skin and subcutaneous tissues.

It causes limited joint mobility and pain. While it appears that chemotherapy slows the spreading of the condition and physical therapy helps, there is no known cure. Once the skin becomes hardened, it seemingly cannot be reversed.

Because so few people have this condition and the first instance of it only being reported in 1971, very little research has been done on stiff skin syndrome. What is known is that it is genetic and is an inherited mutation of the FBN1 gene.

This means that the syndrome can be inherited through one parent and parents with the syndrome would pass this mutation on to their offspring. However, if neither parent has the condition, this means that the mutation of the FBN1 gene is new in that child.

Jaiden’s GoFundMe page has currently raised over $100,000 but that is only a small fraction of what he needs to receive his treatment in Europe, which will hopefully lead to a cure. It’s a race against the clock for Jaiden’s future, and currently, that future remains unknown.

We wish the Rogers family all the best and sincerely hope that Jaiden is able to receive his experimental treatment in Europe. May a cure be found for his condition soon.

If you’d like to donate to Jaiden’s GoFundMe, you can do so here.

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