ALAMOSA – “Some days are better than others.”
That is how Natalie Rogers describes life for her son, Jaiden, 16, who suffers from an extremely rare disease known as Stiff Skin Syndrome. With confirmed diagnoses in only 40 individuals around the world, Stiff Skin Syndrome causes skin to thicken, eventually causing it to be “as hard as stone.”
The Rogers first noticed a spot on Jaiden’s thigh in 2013 when Jaiden was seven years old. In the nine years since then, the condition has spread across much of his body, including his hips, stomach, back and chest.
According to Natalie, the pain is “terrible” in her son’s muscles and joints and debilitating to the point that he can no longer walk. But when the condition spread to his chest and constricted his lungs, his condition went from painful to life threatening. He now relies on a ventilator to help him breathe.
The cause may have a genetic component, as, according to Rogers, others diagnosed with the syndrome carry a genetic marker. Inexplicably, Jaiden does not have that marker. Equally inexplicable, his condition is advancing faster and further than it has with other people sharing the same diagnosis.
Three years ago, one of Jaiden’s doctors put him on chemotherapy, administered orally once a day, and that seems to be slowing down the progression. But the condition is still progressing, impacting his breathing more and more.
And Jaiden is running out of time.
When told by doctors in the United States that, aside from the chemotherapy, there was no treatment, Rogers began looking elsewhere. After doing exhaustive research on her own, Rogers found a possible option in Italy where, at Salvator Mundi International Hospital in Rome, a team of doctors believe there may be hope in a form of stem cell treatment administered in three separate cycles with each cycle lasting roughly a year.
Although the treatment is experimental, “The doctors are optimistic that this will work,” Rogers says. Given that doctors in the United States have said there is nothing more they can do, Rogers says “optimistic” is worth pursuing as she and husband, Tim, do everything possible to give Jaiden a chance.
However, because it is experimental, the treatments are expensive, costing $500,000 for the first one alone and $1.5 million for the estimated three rounds of treatment necessary.
An unnamed individual in Italy has donated $100,000 toward Jaiden’s treatment. In the three years since discovering the possibility of a stem cell treatment, Natalie and Tim Rogers have managed to raise $387,000 through their own efforts. They are now asking for help in raising the last $25,000 to make the first round possible.
As far as the remaining amount, Rogers says she and her husband “will deal with that once Jaiden is in Italy.”
“All the money donated is for Jaiden’s treatment,” Rogers says, adding that she and her husband will “figure out a way” to support themselves in Italy while Jaiden is being attended to by the doctors at the hospital. “It’s hard to do fundraising on top of everything else, but we have to reach out for help because we just can’t do this on our own.”
But, again, Rogers stresses that time is off the essence. “We can’t wait much longer because it’s pressing on his lungs. Once it’s pressing on his heart…”
Rogers is hoping to raise enough money by July 1 to get Jaiden to Italy and asks people to donate and share Jaiden’s story on social media “or with businesses or any other groups that might want to help.”
Anyone wishing to donate can do so by going to www.savingjaiden.com.