Jaiden Rogers has not had an easy life and he is only 12 years old. He was adopted by Natalie and Tim Rogers when he was two years old in 2007. When the couple picked up their son from Georgia to take him to live with them in Colorado, they found the toddler was malnourished. He had been born with fetal alcohol syndrome. The boy had been neglected so much in his first two years of life that his new family found him eating off the dog dish once. In the first year, Jaiden would walk into his parents room in the middle of the night to touch their faces and make sure they wouldn’t abandon him. With a lot of time, love, and patience, Jaiden came to trust that his family was real.”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,” Tim explains.
One day, Jaiden informed his parents that his legs didn’t work anymore and he needed a wheelchair.
Stiff skin syndrome is a rare, genetic condition where the skin thickens and hardens. This causes the joints to be in a bent position.
Fibrillin-1 is the protein responsible for ligaments, fibers, and blood vessels’ elasticity. Additionally, fibrillin-1 supports tissues in the lenses of the eyes, muscles, nerves, and bones.
Currently, there is no cure for stiff skin syndrome.
“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,” says Dr. Elizabeth Swanson. “But what I am hopeful of is this treatment helps prevent the spread of it and holds it in its tracks. That’s a win.”
As the body calcification spreads, Jaiden will be entombed within himself.
Jaiden admits this is physically painful. He should be going six times a week, but this is all his parents can afford.
“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,” Natalie says.
The family is desperate to save their son.
“It’s kind of sounding like we’re running out of options in the United States,” Tim admits. “What we hope is it doesn’t get in the joints. It gets hard as stone.”
He wants everyone to know his condition is, “not contagious.”
Only a DNA test can confirm stiff skin syndrome.
Jaiden who is also mildly autistic reads above his age level but can no longer attend school.
“We were thankful from the beginning. He’s a good kid,” she says.