Jaiden Rogers from Colorado in the US suffers from a debilitating disease that makes his skin as hard as rock.
The 16-year-old was diagnosed with stiff skin syndrome – a rare condition characterised by hard, thick skin – in 2013 after his parents, Tim and Natalie Rogers spotted a hard lump on his neck.
“His skin is basically like stone,” his mom, Natalie, told People magazine. “It’s like tapping on a countertop.”
After being diagnosed with the syndrome, it spread quick to his stomach, hips, legs, and chest, which has left Jaiden battling to breathe.
At first chemotherapy slowed down the progressive disease but his symptoms have since become worse, leaving the 16-year-old in a wheelchair and in severe pain.
To make matters worse, Jaiden has now been placed on a ventilator. He's unable to breathe on his own because of the pressure his hardened skin has put on his lungs. Doctors now fear that the syndrome might affect his heart next.
“It's a race against time and a matter of life or death for Jaiden – we have to rely on donations and people becoming more aware of his condition as it's so rare,” says his worried mom.
“We think that currently Jaiden is the only person in the world with stiff skin syndrome and he is only the 41st person on record to ever have it.
“He's basically paralysed. If it spreads further over his heart and lungs, he's going to die.”
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The family have had to move several times to get Jaiden treated, Natalie says.
“Since his diagnosis, we've had to move all over the place to see specialists because not many understand his condition or have even heard about it.
“We even had to move from Colorado to Georgia just so he was in a state with a lower altitude so he could breathe better,” she says.
Jaiden’s life has always been challenging. He was born to a single mom and later adopted by Natalie and her husband in 2005 because his biological mother couldn’t support him financially.
“We spent the first few years teaching him how to speak, playing with him, and just trying to be a family,” Natalie says.
He was also diagnosed with autism at the age of five, which made it hard for him to socialise with other kids.
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Jaiden is currently receiving pioneering stem cell treatment in Italy.
“Although the medicine is starting to work and slow down the spreading, he is still very unwell and we need to raise more funds to keep him receiving this treatment.
“We essentially need a $1 million (R15 million) because he is on 10 different medications including chemo medication and heavy painkillers. If he stops the treatment, it will spread further and he will die if it crushes his organs,” Natalie says.
Tim and Natalie have started a GoFundMe page to help pay for their son’s medical expenses.
“Money is in the way. We just want our boy to live," Natalie says. “We’ve taken out three mortgages on our home and have spent Tim’s retirement.
“We just keep plugging away and trying to find something. We do what we have to do.”
Sources: foxnews.com, people.com, tomonews.com, rarediseases, Mirror, The Sun