Colorado boy battling rare skin condition that is turning him to ‘stone’
CENTENNIAL, Colorado -- A Colorado family is searching for answers for their son who suffers from a debilitating and rare skin condition. So rare, only 40 other cases have ever been reported.
Jaiden Rogers is slowly turning into stone. For years, Jaiden has seen many doctors and by now, you would think someone would be able to help him.
"People don't get it, mainly because people don't know what it is. No one has ever heard of it," said his father, Tim Rogers.
Three years ago, his parents noticed some spots on his skin were hardening.
"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," Rogers said.
The spots have spread to his legs, back and hips, and it has made it difficult for him to walk. Jaiden told his parents one day matter of factly that his legs don't work and he needed a wheelchair.
Doctors eventually determined it is "stiff skin syndrome."
"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 his mother, Natalie.
With every passing day, the symptoms get worse. Jaiden will tell you that it hurts, but he can't describe how it feels. For now, there's no cure and really no treatment.
"I had kind of exhausted the medical library trying to come up with a treatment myself," Dr. Elizabeth Swanson said.
But it's not a lack of trying.
Jaiden's doctors continue to try everything, including his latest round of chemotherapy drugs, usually used to treat cancer. It seems to be slowing the spread for now.
"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. 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," Swanson said.
This would be a win for future victims of the disease.
"Maybe we are a little too late to really make a huge profound significant difference for Jaiden because of what is already there, but the next patient that gets diagnosed with SSA can start on this medicine on day one of diagnosis and stop it at that point in time," Swanson said.
For now, Jaiden's parents say physical therapy is one of the only things they can do and they have learned the community in their hometown of Alamosa, Colorado is there for them.
Tim Rogers reflects on a time when they needed a pool.
"Our goal was to have a therapy pool, wanted to be able to use it year round. That's where he does his therapy. They did a fundraiser for us. Very quickly, within six hours, raised $8,000 to build us a therapy pool that is enclosed. It's a swim spa," he said.
The Rogers said they will explore every option.
"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 Rogers said.
His parents said Jaiden is a survivor and though his skin might be tough, he has a soft spot in his heart.
His parents are considering going to Europe, where different drug therapies are available.