A Colorado boy turning to “stone” is searching for answers as he deals with a rare genetic disorder. The cutaneous stone skin condition is characterized by a “rock hard” toughening of the soft tissue, which leads to skin lesions and limited joint mobility.
Writes ABC News on Feb. 22: “Jaiden Rogers was first diagnosed with so-called stiff-skin syndrome at age 7. Three years later, the disease covers so much of his body in rock-like lesions that he is on oxygen and unable to go to school.”
According to the U.S. Department of Health and Human Services (DHHS), stiff skin syndrome is a “rare condition characterized by hard, thick skin (usually on the entire body),” which also causes flexion contractures – when arms, legs and fingers are stuck in bent, flexed positions.
Per the DHHS site, other signs and symptoms may include “excessive hair growth (hypertrichosis), loss of body fat (lipodystrophy), muscle weakness, slow growth, and short stature.”
Rogers’ mother, Natalie Rogers, said they are searching for treatment. “It started as small little patch and it spread all over,” Rogers told ABC News. “They’re trying to slow it down as much as it can, until we can find something,” she said, describing Jaiden’s lesions like “little marbles under the skin.”
The young Colorado boy must now use a wheelchair to get around, since his legs have turned to stone, as it were.
Jaiden’s condition is so rare, he’s only the 41st person to ever be diagnosed with stiff skin syndrome. While he looks normal, his skin is hard to the touch. Jaiden’s father, Tim Rogers, told FOX 31 that when he touches his son’s legs, they feel like you’re “tapping on a countertop.”
Dr. Elizabeth Swanson, with the Children’s Hospital in Colorado where Jaiden is being treated, said they have “kind of exhausted the medical library trying to come up with a treatment.”
A YouCaring page has been set up to assist Jaiden, who is adopted, and his family, and to draw attention to the rare disorder. To date, just over $11K has been raised; the target goal however is $400K.
The narrative is a heartrending tale detailing efforts by Tim and Natalie Rogers to welcome into their home Jaiden, who suffered from fetal alcohol syndrome and whom they found “neglected and malnourished, huddled next to his filthy car seat.” Jaiden was even once observed “eating dog food out of a dog dish because he hadn’t been fed,” the site reads.
Jaiden, who is now nine years old, is in therapy three times per week. Doctors have told the family that Jaiden should be in therapy almost every day in order to prevent the spread of the lesions, but the family said the co-pays are enormous. Still, Jaiden smiles and jokes with his doctors, despite the pain.
“He’s very outgoing,” she said of her son. “But he’s on so many meds, most of the time he’s tired and strung out… Literally, it’s turning him to stone; he’ll be entombed in himself if we can’t find something.”