A family is rushing to save their 14-year-old boy's life from a rare disease that causes his whole body to harden and feel "like tapping on a countertop."
Doctors diagnosed Jaiden Rogers with stiff skin syndrome in January 2013, an extremely rare disease that thickens the skin and causes the person's body to harden. "He’s becoming entombed within himself," Natalie Rogers, Jaiden's mother, told People magazine in 2018.
The magazine reported that the disease began in the 14-year-old's thigh and rapidly crawled up to his hips, stomach, back, and chest that caused unbearable pain in his joints and muscles. Jaiden is currently battling against severe breathing issues as the disease spreads through his entire body.
|Photo courtesy of the Roger's Family|
These breathing issues led to Jaiden being put into an induced coma as the stiff skin compressed his chest wall to the point where the boy couldn't even breathe on his own, People magazine said.
He's been bedridden and has relapsed since "getting over that hurdle," his mother said. She added that her son sleeps 20 hours a day, has to take three strong pain medications, and spends a majority of his time lying on his bed and on a respirator.
Years of medication are sucking the family of their money, yet there seems to be no cure for the 14-year-old. They do want to try a special stem cell treatment in Europe that specifically targets rare skin diseases, but the family doesn't have the financial capacity to do so.
Natalie said doctors in London gave them a grant, but their family still has to come up with $400,000—a figure they are trying to complete on their GoFundMe page.
"This is our only shot to save our boy," she told People. "Watching him like this is unbearable. We are running out of time. It’s only getting worse."
|Screen-grabbed from People TV|
On top of saving up for possible treatment, the family's expenses also include driving four hours a month to Children’s Hospital Colorado in Denver, where they stay for a few days and speak with doctors.
They are also looking to relocate in Georgia from their Alamosa, Colorado home since the elevation there is much lower and might help with Jaiden's breathing and buy him more time.
"We’re trying to do anything that could possibly help," the mother said. "Leaving Colorado might be a short-term answer."