Save Jaiden Rogers: Colorado teen's parents are fighting to save their son whose rare skin disease is crushing his lungs and turning him to stone
Jaiden has an extremely rare and debilitating skin disease called Stiff skin syndrome (also known as Congenital fascial dystrophy) that is essentially causing his skin to harden - turning it to stone. His own body is crushing his chest, making it hard for him to breathe.
At 14 years old Jaiden Rogers should be like any other teen, living his carefree years looking forward to high school and prom and hanging out with friends. Instead he spends his days in a hospital bed away from his home in Alamosa, Colorado -- sedated and in pain. His own body is crushing his chest making it hard for him to breathe.
Jaiden has an extremely rare and debilitating skin disease called Stiff Skin Syndrome (also known as Congenital fascial dystrophy) that is essentially causing his skin to harden -- turning it to 'stone'. He was diagnosed in 2013 after it started on his thigh, eventually spreading to his arms, legs, back and now his chest. The disease causes excruciating muscle and joint pain and with the skin around his chest wall hardening, he is having a very hard time breathing. He is also on the autisim spectrum.
According to Dr. Margarita Saenza, a clinical geneticist at Children’s Hospital Colorado and also Jaiden's doctor, the first instance of SSS can be traced back to 1971. Ever since then only a handful of cases have been registered and diagnosed in hospitals around the world. There have only been 41 cases of this disease and Jaiden's is the only active case doctors are aware of.
"The pain that Jaiden suffers on a daily basis is excruciating. Doctors say Jaiden is suffocating in his own body," his heartbroken mother Natalie Rogers told MEA World Wide (MEAWW), "Jaiden is now not able to breathe without assistance. He was placed on life support for three weeks to help expand his lungs." The boy is on two different chemo medicines, five different ones that help with pain and other drugs that help with his mental health, Rogers says.
"Jaiden is also on a feeding tube to help with nutrition. This has been a very difficult year for all of us," she said. When he's awake and not undergoing any procedures and feeling a little better, he likes to play video games and read to make himself happy. He's also a huge fan of 'The Voice' coach Kelly Clarkson, his mom says. "He absolutely loves her," she said.
The doctors in the United States are unable to offer any more help to Jaiden -- there just isn't anything more that they can do, Natalie says. But, there's a special stem cell treatment developed for skin diseases like Jaiden's and his parents, Tim and Natalie Rogers want to give it a shot.
But medical bills don't come cheap. The family has started a GoFundMe page for his treatment, desperately trying to save their little boy, racing against time. "I need to raise a total of $1.5 million. The treatment alone is $1,100,000. The cost to fly Jaiden to Europe via medical plane is $125,000 each time we have to fly him," she says. They also have to live in Europe for the treatment and have been struggling to pay the "outrageous" rent in London and Dublin as well. "We need a little help with that if possible," she adds.
Moreover, Natalie herself was diagnosed with Friedrich’s Ataxia in 2016, three years after Jaiden was diagnosed. The condition is an autosomal recessive genetic disease that causes difficulty in motor skills and a loss of sensation in limbs and impaired speech. It worsens over time and for Natalie it has reached a point where she needs a heart transplant in the next two years. "It's not looking good at the moment," she tells us, trying her best to stay positive, "I truly don’t care what happens to me, I just need to save Jaiden," she says.