This 12-Year-Old Boy Suffers From A Rare Condition, And It’s Slowly Hardening His Whole Body

Image: Rogers Family via People

In many ways, Jaiden Rogers is just like any other 12-year-old. He has a family who love him dearly, for instance. And Jaiden’s a Harry Potter fan who spends his free time catching up on episodes of The Twilight Zone and playing video games.

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Jaiden had some difficulties to overcome in his early childhood, however. He was put up for adoption at a young age and was then taken on by Natalie and Tim Rogers. The couple have done everything they can to give him the best life possible.

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Natalie and Tim decided to open their hearts to adopted children after learning that they couldn’t conceive. Jaiden, who is now 12, was the couple’s third adoptee, in fact. He suffered from malnutrition and fetal alcohol syndrome when they first took him in, but Jaiden was nursed back to good health by his adoptive parents.

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Jaiden was subsequently found to be autistic when he was five years old. The condition made it difficult for him to communicate with other family members. “We spent the first few years teaching him how to speak, playing with him and just trying to be a family,” Natalie told People magazine in July 2018.

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Jaiden’s parents told People that their son’s only wish was to be the same as other boys, playing outside and having fun. It was soon clear that this would become even more difficult for him a year after his autism diagnosis, however. The new development began when his dad discovered a large lump on one of Jaiden’s legs.

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After visits to medical professionals, it became apparent that Jaiden was suffering from congenital fascial dystrophy. The disease, also known as “stiff skin syndrome,” is extremely rare. In fact, he’s only the 41st person in history who’s known to have been diagnosed with it.

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The main impact of stiff skin syndrome is that it causes human skin to become extra-thick. Sufferers’ flesh begins to feel rough like a stone, in fact. The condition leads to terrible pain in whatever parts of the body it affects. Ultimately, it leaves the sufferer immobile in that part of the body, too.

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Stiff skin syndrome is progressive, indicating that it becomes more severe over time. So by the time that Jaiden’s parents conducted media interviews to spread awareness of the condition, it had spread to his back, hips and stomach. There is a danger that if it reaches his chest, then Jaiden might develop breathing difficulties.

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The Genetic and Rare Diseases Information Center (GARD) states that the condition is likely to spread to large joints such as knees, shoulders and elbows. Other reported symptoms include dramatic weight loss and problems with children’s rates of physical development as they become older.

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GARD also reports that a gene mutation is responsible for stiff skin syndrome. It is this that causes the skin to become so thick, which in turn leads to sufferers having trouble moving their joints. Sometimes, these joints can eventually be permanently forced into unnatural positions.

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Stiff skin syndrome isn’t defined as a fatal condition, though. Nonetheless, the breathing problems that could result from its spread towards the chest area might endanger a sufferer’s life. Jaiden’s parents expressed fears to Fox News that their son might be “entombed within himself.” They’re nonetheless hoping that a cure can be discovered before that point is reached.

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Chemotherapy is helping Jaiden keep the disease at bay to an extent. He’s following physiotherapy routines and taking extra-strong painkillers in order to get through his days, too. The main problem is that there are no known medical solutions that can improve the condition. As things stand, then, this progressive syndrome is irreversible.

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It’s believed that a drug called mycophenolate mofetil could help improve the quality of life for sufferers of this disease. However, the administration of such treatment is very expensive. Any other experimental procedures are likely to prove extremely costly as well.

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As well as paying for Jaiden’s usual treatment, Natalie and Tim also have to take him regularly to a specialist children’s hospital in Denver, Colorado, which is several hours from their home town. They’ve admitted that money has become a stumbling block in their efforts to help Jaiden overcome this condition.

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The family have already resorted to having a second and third mortgage on their home, in fact. They’ve also used up all of Tim’s retirement fund. Almost out of ideas, the couple have now decided to set up a GoFundMe page in order to attract donations from generous third parties.

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Speaking to People, Natalie admitted, “Money is in the way. We just want our boy to live.” Tim added, “We just keep plugging away and trying to find something. We do what we have to do.”

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Jaiden has since appeared on several popular television shows, as well as in People magazine. This in turn has helped to increase the amount of donations. In October 2018 the family were almost a tenth of the way to their $1.5 million target. This money would go towards specialist stem cell treatment in Europe.

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On their GoFundMe page, the family made a tragic but interesting point about why the treatment was so expensive. “Medical companies don’t make a profit off of rare diseases,” the statement read. “Therefore, money isn’t being used to find a treatment for this condition. It is left up to the parents to pay this money for their children. So, when you have to reach out for help on your own it is VERY expensive.”

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Natalie has her own health issues to contend with, too. She has suffered from a neuromuscular condition called Friedrich’s Ataxia since 2016. This disorder leads to a degeneration of the muscles and could even possibly be fatal. She’s a stay-at-home mom, but dad Tim has to pitch in when Natalie struggles to take care of herself.

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If you’d like to support the cause to help Jaiden find a cure for the condition that’s slowly turning him to stone, you can donate at the GoFundMe page titled Saving Jaiden. The webpage includes the full story of his battle with stiff skin syndrome and more details about the condition itself.

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