Boy "turning to stone" from rare medical condition
- 6 years ago
ALAMOSA, COLORADO — A family is desperately searching for a cure for their son, whose debilitating condition is basically turning him into stone.
Fox43 reports that Jaiden Rogers has congenital fascial dystrophy, or stiff skin syndrome — a connective tissue disorder characterized by thick, stone-like skin.
The 12-year-old's struggle with the disease started six years ago, when his adoptive dad Tim Rogers noticed a small, hard lump on his right thigh that got bigger and spread at an alarming rate.
It soon wrapped around his legs, hips, butt, and arms, and making it difficult and painful to move, and confining him to a wheelchair.
Chemotherapy slowed the calcification for a while, but the symptoms have since gotten worse, with Jaiden now needing a respirator to help him breathe.
Only 40 other cases of the rare condition have ever been documented in the world, so doctors know very little, and are still struggling to find a cure. They say the worst case scenario is total paralysis, with Jaiden becoming entombed within himself.
Stem cell treatment in Europe could be the boy's last hope, but the family's finances have already been exhausted.
A GoFundMe account has been set up to fund the medical costs. Only $43,000 of the $1.5 million goal has been raised so far, but family and friends say donating air miles or hotel points would also help.
Fox43 reports that Jaiden Rogers has congenital fascial dystrophy, or stiff skin syndrome — a connective tissue disorder characterized by thick, stone-like skin.
The 12-year-old's struggle with the disease started six years ago, when his adoptive dad Tim Rogers noticed a small, hard lump on his right thigh that got bigger and spread at an alarming rate.
It soon wrapped around his legs, hips, butt, and arms, and making it difficult and painful to move, and confining him to a wheelchair.
Chemotherapy slowed the calcification for a while, but the symptoms have since gotten worse, with Jaiden now needing a respirator to help him breathe.
Only 40 other cases of the rare condition have ever been documented in the world, so doctors know very little, and are still struggling to find a cure. They say the worst case scenario is total paralysis, with Jaiden becoming entombed within himself.
Stem cell treatment in Europe could be the boy's last hope, but the family's finances have already been exhausted.
A GoFundMe account has been set up to fund the medical costs. Only $43,000 of the $1.5 million goal has been raised so far, but family and friends say donating air miles or hotel points would also help.