In 2013, Jaiden Rogers was diagnosed with congenital fascial dystrophy, also known as stiff skin syndrome. The disease is extremely rare and causes the skin to harden, making the skin feel like stone.
“His skin is basically like stone,” Jaiden’s mom, Natalie Rogers, told People. “It’s like tapping on a countertop.”
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The disease began in Jaiden’s thigh and has now spread down his legs and around his hips.
The stiffening of the skin leads to limited joint mobility, which could ultimately cause Jaiden to “become entombed within himself,” Natalie explained to People. While the disease in itself isn’t fatal, it could potentially restrict Jaiden’s chest and lung cavity and make him unable to breathe.
“We hit walls all the time,” Natalie said. “Not enough people have this so there’s nobody to talk to.”
The damage that has been done to Jaiden already is irreversible, and his parents are desperately seeking a way to prevent the disease from spreading.
“Maybe there is a medication out there that is being used for something else that could be used for Jaiden to try,” his father, Tim, said. “We’ve been contacting geneticists both in the United States and in Europe.”
“We just keep plugging away and trying to find something,” he added. “We do what we have to do.”
A stem cell treatment in Europe focuses on rare skin diseases, but with a cost of over $1 million, it’s not easily accessible.
“We’ve taken out three mortgages on our home,” Natalie said, “and have spent Tim’s retirement. There is nothing else we can do.”
The family has created a GoFundMe page to help with Jaiden’s medical bills. The 12-year-old is currently on chemotherapy and pain medication and uses a feeding tube, oxygen to help him breathe and a wheelchair to prevent him from falling and breaking his bones.
Each month, Jaiden and Natalie drive four hours to Children’s Hospital Colorado in Denver, where they stay for a few days to meet with doctors.
“Jaiden wants to run and play and he just can’t do it,” Tim said. “He wants to be a normal kid.”
Jaiden’s genetic specialists, Dr. Margarita Saenz at Children’s Hospital Colorado, shared that advancements in medicine have given her hope that something may be able to help Jaiden in the future.
“Even in the last decade of genetic medicine as a whole we’ve seen amazing things that we never thought were possible,” she said. “Particularly with Stiff Skin Syndrome. 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.”
Photo Credit: GoFundMe
