“It’s pretty much our last chance.”
Natalie Rogers sits on an examination table inside a medical clinic in Littleton, watching her son, Jaiden, just a few feet away in his wheelchair playing a video game.
For the past seven years, the 14-year-old has struggled with one of the world’s rarest diseases — stiff skin syndrome. It’s a condition that has caused his skin to gradually tighten and harden, spreading from his legs to his hips and then to his stomach and neck.
READ MORE: Alamosa boy's rare stiff skin condition worsening
Natalie says her son is “turning to stone,” leaving him unable to walk and sometimes giving him trouble breathing. He sees six doctors and takes chemotherapy drugs to slow the disease’s progression.
“He can’t expand his lungs and take a deep breath,” Natalie said. “He’s on many pain medications that make him tired.”
Natalie and husband Tim are banking everything they have that an experimental drug being developed overseas may finally ease, if not reverse, his symptoms.
Read the rest of this story on The Denver Post's website here.
