Age 12 Boy Turning to 'Stone.' Parents Fight for Cure Before He 'Becomes Entombed'
Jaiden Rogers has not had an easy life. It didn’t start easy, and the going is only getting more rough.
Born in 2005, he had fetal alcohol syndrome. He was kept in poor conditions and even ate dog food to stave off his hunger.
When Tim and Natalie Rogers welcomed the sickly little boy into their lives and hearts, things got better. He had an older sister — also adopted — and a family who loved him very much.
But that didn’t keep him from waking up at night and checking to make sure his parents were still in the house, feeling their faces to reassure himself that he was not alone.
In 2012, Tim noticed something was wrong with his son’s thigh. Underneath the skin there was a hard lump.
Doctors told him to keep an eye on it, but no one was prepared for how quickly the condition escalated. They sought out more doctors when his mobility became impaired.
Soon they discovered that their son was experiencing an “ultra rare” connective disorder known as Stiff Skin Syndrome. He was only the 41st known case of the disorder in the world.
The condition causes calcifications beneath the skin. Instead of having regular elastic skin, Jaiden had skin that was starting to calcify. Generally, the condition will also cause large joints to get stuck in one position.
Because the disorder is so rare, no one really knows exactly how to help. The now-12-year-old is on 10 medications daily and has had chemotherapy to try to slow the hardening of his skin.
“We hit walls all the time,” his mother said. “Not enough people have this so there’s nobody to talk to.”
The family can only guess at what Jaiden’s future will hold. While not lethal on its own, the condition severely limits Jaiden’s ability to move and even breathe on his own, which is why he’s now on oxygen.
His parents fear that he will slowly turn to stone until he loses all mobility. There are some specialists who are holding out for a cure, though.
“Even in the last decade of genetic medicine as a whole we’ve seen amazing things that we never thought were possible,” Dr. Margarita Saenz, a doctor at Children’s Hospital Colorado, said.
“Particularly with Stiff Skin Syndrome,” she continued. “We’re not there yet for a cure or gene therapy kind of intervention, but really as fast as technology is moving, it’s within the possible.”
The family has discovered a new treatment option available only in Europe, and they’re trying to raise funds to get Jaiden over there and give him a shot at beating the condition.
Hopefully Dr. Saenz is right, and this family will be able to get Jaiden back on the road to recovery — he certainly deserves a break!
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