Less than 50 cases in the world: boy from Colorado ‘petrified’ because of a rare disease

Bedridden 14-year-old from Colorado who suffers from a rare disease, slowly causes the hardening of his skin. According to the mother, the son’s only getting worse, the boy is imprisoned in his own body, turning into “stone”.

Менее 50 случаев в мире: мальчик из Колорадо 'окаменел' из-за редкой болезни

Photo: a video frame People

The family of 14-year-old boy hopes to find a cure for rare disease that causes hardening his entire body, writes the People.

In January 2013 Jayden Rogers found fascial dystrophy, or hard skin syndrome, an extremely rare disease which thickens the skin and essentially turns his body to stone.

“It’s like that knock on the table, — said 53-year-old foster mom, Natalie Rogers. — He was imprisoned in his own body.”

The disease was first started with the hip area and quickly struck the thighs, stomach, back and chest of the boy, causing unbearable pain in the joints and muscles. To date, the disease has spread throughout the body of a teenager and Jayden had serious breathing problems.

The six-year history of struggle with the disease was filled with rather downs than UPS. In March this year, Jayden entered into an artificial coma: hard leather clutched his chest wall to such an extent that he could not breathe on his own.

Since then the boy has become much worse, says mother. He sleeps about 20 hours a day, takes three strong painkillers and spends most of his time in bed with a respirator. When Jaden’s not asleep, he can watch soap operas and play on the computer — two things that are still his delight.

Менее 50 случаев в мире: мальчик из Колорадо 'окаменел' из-за редкой болезни

Photo: a video frame People

Medical bills piling up, and the family knows that there is no treatment. Special stem cell therapy intended for rare skin diseases, held in Europe — and Rodgers wants to try. The problem is that it costs a million dollars. London doctors received a grant for treatment, but the family must still pay about 400 thousand dollars. Now on the GoFundMe page there is a fundraiser.

“This is the only chance to save our boy, — said Natalie. Looking at him is unbearable. We are out of time. It only gets worse.”

Along with the savings in potential treatment costs include the four-hour drive once a month to Children’s hospital Colorado in Denver, where the family stops for a few days and met with doctors working on the case of Jayden.

The family is also trying to move from Colorado to Georgia, in the region located below the sea level — it can help easy the boy and to win time for him.

According to Dr. Margarita Saenz, clinical genetics at Children’s hospital Colorado, which treats Jayden, the first case of this syndrome was registered in 1971. Since then, the world recorded just a few dozen cases.

“What is happening is almost scarring, fibrotic changes of the skin,” says Saenz.

The life of Jaden was difficult from the beginning. He was born to a single mother and was given up for adoption, Natalie and Tim Rogerson.

“The first few years we taught him how to talk, play and just tried to be a family,” said Natalie.

Менее 50 случаев в мире: мальчик из Колорадо 'окаменел' из-за редкой болезни

Photo: a video frame People

In 5 years, Jayden was diagnosed with autism, limiting his ability to communicate. Only a year Tim first discovered the stain on the right thigh of Jaden. The biopsy results later showed his incredible diagnosis.

“At first we were so scared,’ said Tim. We could not believe that the answer is no, because it is a very rare disease. We could not find someone who faced it”.

“Three times we’ve mortgaged our house,’ said Natalie, “PEOPLE” in 2018, and used retirement savings Tim. There’s nothing more we can do.”

Менее 50 случаев в мире: мальчик из Колорадо 'окаменел' из-за редкой болезни

Photo: a video frame People

Most Natalie also has a serious disease — in 2016 she was diagnosed with “Friedrich’s ataxia”, a degenerative and potentially fatal neuromuscular disorder that causes loss of muscle control and coordination.

In the next two years she needed a heart transplant, but while the foster mother is focused on her baby.

“I know I have to take care of himself, but he is our main priority, she says. — Jaden is everything”.