One of the worst fears of any parent is to have your child pass away before you do.
It's a devastating loss that nobody should go through, but for one family in Alamosa, Colorado, it's a reality they may have to face.
While Jaiden Rogers, 12, looks like every other other preteen his age, looks can be deceiving.
In 2013, Jaiden was diagnosed with stiff skin syndrome, a rare disease that makes an individual's body harden.
"His skin is basically like stone," his mother Natalie Rogers explained. "It’s like tapping on a countertop."
The irreversible condition first started in his thigh, and quickly spread to his hips, stomach, and back. Jaiden's already suffering from tremendous joint and muscle pain, he's now experiencing difficulty breathing as the disease makes its way to his chest.
Although stiff skin syndrome isn't fatal on its own, the consequences of the disease will see his airways restricted as his chest and lung cavity begin to harden.
"What’s happening is almost a scarring — a fibrotic change to the skin itself," Dr. Margarita Saenza, a clinical geneticist at Children’s Hospital Colorado said.
The first case of stiff skin syndrome was first reported in 1971, but since its discovery, only a few dozen people have been diagnosed with the harrowing condition.
Jaiden's life before his diagnosis wasn't easy either. He was taken in by Natalie and Tim Rogers at the age of two, when his teenage birth mother could no longer take care of him. When he was five, he was diagnosed with autism, which has limited his communication skills.
"We spent the first few years teaching him how to speak, playing with him, and just trying to be a family," Natalie explained.
Jaiden was only six years old when his father first discovered a hard spot on his thigh, which eventually led to his diagnosis.
"We were so confused at first," Tim shared. "We couldn’t believe there were no answers because it’s so rare. We couldn’t find anyone else who had it."
The treatment for Jaiden's condition hasn't been cheap, and the family have now set up a GoFundMe page to help with the financial burden.
Once a month, the family make the four-hour drive to the Children’s Hospital Colorado in Denver to consult Jaiden's doctors on what their next steps will be.
Although chemotherapy has helped slow down the progression of the disease, Jaiden's also on medications that make him sleep up to 18 hours at a time.
"We’ve taken out three mortgages on our home," Natalie said. "And have spent Tim’s retirement. There is nothing else we can do."
But, Jaiden isn't the only one in the Rogers household to have serious health concerns either. In 2016, Natalie was diagnosed Friedreich’s Ataxia, a potentially fatal disease that causes progress damage to one's nervous system. It can also lead to scoliosis, heart disease and diabetes.
"It gets hard sometimes to care for Jaiden when I’m having to take care of myself," she said. "That’s where Tim comes in and takes over."
Despite the difficulties that lie ahead, his parents are trying to everything they can to stop the disease in its tracks before their son "becomes entombed within himself," and won't ever give up hope.
"You do whatever you have to do," Tim concluded. "We won’t stop trying. One way or another, we’ll do what’s best for Jaiden."
Our thoughts and prayers are with the Rogers family, and we hope a cure for stiff skin syndrome is found soon.
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Please visit the Saving Jaiden GoFundMe for more ways to help & updates.