It seems like some people can't seem to catch a break, and sadly, 12-year-old Jaiden Rogers is one of them. After a tough start in life, Jaiden experienced a rare stroke of luck when his parents, Natalie and Tim Rogers, adopted him and became the parents he truly deserved. Unfortunately, Jaiden's good luck came to an end four years ago, when he was diagnosed with one of the rarest skin diseases in the world...
He Was Neglected As A Baby
Natalie and Tim Rogers adopted Jaiden when he was two years old. They picked him up from Georgia and brought him home to Colorado, certain that it was the start of something special for everyone involved. It wasn't long before they realized that Jaiden had been severely neglected by his biological parents during his first two years of life.
Even In The Womb, Jaiden Had A Hard Life
Jaiden was born with fetal alcohol syndrome, which means his mother would have been drinking throughout the pregnancy. It can cause developmental issues and delays in growth, amongst other things. As a toddler, he was also malnourished - in the early days Natalie and Tim were shocked to find him eating from the dog bowl when they weren't looking, a habit from his previous life.
He Didn't Want To Be Abandoned
It took some time before Jaiden got used to the idea that life had changed permanently and his lovely new parents weren't going anywhere. In his first year with Natalie and Tim he would enter their bedroom in the middle of the night to touch their faces and make sure they weren't leaving him. Soon he finally believed his good luck was here to stay.
Tragedy Found Jaiden Again
After a wonderful six years with his loving parents, things started going horribly wrong for Jaiden once more. Tim noticed some lumps on his son's arm that were extremely hard to the touch. "It's almost like if you took your finger and tapped on his arm, it's almost like tapping on a counter top, on a hard surface. That's what it feels like," he explained.
The Mysterious Spots Began To Spread
Jaiden's spots were a mystery to his doctors, and as time went on, they started to spread to his back, legs, and hips. It ended up getting to the point where Jaiden told his parents his legs didn't work anymore. By this stage, he needed a wheelchair to get around. Eventually, one of his doctors came to a diagnosis, but it wasn't good news...
Stiff Skin Syndrome
As the name suggests, Stiff Skin Syndrome (SSS) causes the skin to thicken and harden, exactly as Jaiden's dad described when he discovered the lumps. It is an extremely rare genetic disorder, which is caused by a mutation of the FBN1 gene. SSS can be diagnosed by skin evaluation and confirmed with genetic testing. Unfortunately for Jaiden, this was his diagnosis.
What Is The FBN1 Gene Anyway?
The FBN1 gene is responsible for making Fibrillin-1, a protein that takes care of elasticity of blood vessels, fibers, and ligaments within the body. It also supports tissue in other areas, including the bones, muscles, eyes, and some nerves. As you can imagine, without a properly functioning FBN1 gene, joints become stiff and bent into one place, as they have in Jaiden's case.
It's As Though He's Turning To Stone
With Jaiden's joints hardening and locking into place, it's really as if he's turning to stone. It's kind of outrageous sounding when you say a boy turning to stone. People can't get that through their mind. That's basically what's happening," said Natalie. His parents are watching him gradually freezing up over time - a confusing and heartbreaking situation for any mom and dad.
There Is No Cure
Stiff Skin Syndrome is so rare that no cure exists and everything doctors try to stop its progression is experimental at best. Jaiden's doctors have been giving him chemotherapy in a bid to delay the spread of the condition, which has been mildly successful so far. Physical therapy has also been useful in keeping the joints moving.
No Turning Back
One of the worst things about this terrible condition is that once the skin hardens, there's no way to reverse it again. "The unfortunate thing with stiff skin syndrome is that once the skin has done this, that area is done. We're not going to be able to bring back normal skin to that area," said Dr. Elizabeth Swanson, one of Jaiden's doctors.
Any Progress Is A Win
Though Jaiden's situation is dire, Dr. Swanson believes they can hold off SSS for the time being and cross their fingers for a cure in the future. "What I am hopeful of is this treatment helps prevent the spread of it and holds it in its tracks. That's a win." said Dr. Elizabeth Swanson. We think the rest of the world is crossing their fingers for Jaiden, too.
Only 41 People Have Been Diagnosed With SSS
With only 41 official diagnoses recorded in the world, you can see how truly rare Jaiden's condition is. Without the resources to work on a cure, it would be terrifying to be one of those people, considering you eventually become entombed within your own body. Jaiden's parents have spoken out in the hope that this condition will get more scientific attention.
Options Running Dry In The USA
Natalie and Tim can only afford half of the physical therapy sessions Jaiden needs and feel that their options are now running out. They may consider Europe, where some countries have drug therapies available that are not approved at home. They feel it's a race against time. "What we hope is it doesn't get in the joints. It gets hard as stone," said Tim.
His Hips Have Turned To Stone
Jaiden's hips have now been entombed by SSS, and though he can read above his age level, he can no longer attend school. He has been in a wheelchair for years, and the hardest part for him is that he is now unable to play with his friends. He also fears that his friends may desert him if they think his condition is contagious.
His Parents Won't Give Up
Clearly a fighter from the start, Jaiden's parents are also willing to fight with their son as best as they can. But it's always going to be tough. "You know you love him too much. You don't know what to do. You try to fight for everything you can, but you don't know how to fight in this case. You don't know what to fight for," said Natalie.
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