Can you imagine a person turning to stone?
It sounds like something out of ancient mythology – a mere legend.
But for 12-year-old Jaiden Rogers, this is a reality.
Jaiden doesn’t look much different from any other person his age, but he was diagnosed with stiff skin syndrome in 2013.
This condition is a very, very rare disease that results in the hardening of the body.
According to Natalie Rogers, Jaiden’s mother, Jaiden’s skin is completely hard and feels like stone.
Tapping on his skin is like tapping on a hard surface, such as a table or countertop.
The family first noticed a hard spot on the skin of Jaiden’s thigh when he was just six years old, and this eventually led to his diagnosis.
Stiff skin syndrome occurs as a fibrotic change to the entire skin’s structure, almost like scarring over, according to Dr. Margarita Saenza, who works with the Children’s Hospital Colorado as a clinical geneticist.
It is an irreversible disease that was first reported back in 1971, but ever since that first case and the conditions discovery, only a few dozen more cases have emerged.
Jaiden has faced many other difficulties in his life, too.
At two years old, his birth mother – who was just a teenager – was unable to take care of him any longer, and he was taken in by Tim and Natalie Rogers.
He was then diagnosed with autism at the age of five, and the condition has made his communication skills somewhat limited.
His parents worked hard to make him feel at home and like they were a family, playing with him and teaching him to speak.
When Jaiden first developed stiff skin syndrome at six, it began in his thigh and spread very quickly to his hips, then his stomach, and now his back.
Every day, he deals with huge amounts of muscle and joint pain, and as the syndrome continues to advance on his chest, he faces breathing difficulties, too.
Stiff skin syndrome is not a fatal disease by itself, but as Jaiden’s lung cavity and chest start to harden, his airways will become more restricted.
At first, the Rogers were confused and frustrated as they couldn’t find anyone else who had the condition.
Now, they take a four-hour drive down to the Children’s Hospital Colorado every month to discuss with doctors about what they can do next.
Jaiden is currently undergoing chemotherapy that helps slow down the disease’s progression, and he takes 10 medications a day, 4 of which are very heavy duty.
This causes him to sleep 18 hours at a time.
All these medical expenses have not been easy on the family.
They have had to take three mortgages out on their home and have spent all of Tim’s retirement fund.
They have no way left to raise money, but the life-changing care that Jaiden needs will cost US$1.5 million.
It certainly doesn’t make it any easier that Natalie Rogers herself has Friedreich’s Ataxia.
She was diagnosed in 2016 and this disease is potentially fatal and results in progressive nervous system damage.
This can also cause heart disease, scoliosis, and diabetes.
Despite the difficulties, both of Jaiden’s parents are committed to doing everything they can do in order to stop this disease from taking their precious child.
If you’d like to help, you can donate to the family’s GoFundMe page.