Ten-year-old Carson has a condition so rare and complex that you’ve probably never heard of it. But the effects are all too real.
As a baby, Carson’s skin was exceptionally soft and he would get a cut simply by running a finger over the seam of an inflatable toy. He didn’t learn to walk until he was 18 months old, and while most kids fall down and get up while learning, just a small tumble would require stitches for Carson. It was all highly unusual but a dermatologist found the problem.
“After needing so many stitches while learning how to walk, I realized that Carson did not have normal skin and he might need to see a specialist,” says Carson’s mom, Carla. “The dermatologist said he hadn’t seen this type of condition in 20 years.”
At just 23 months old, the Saskatoon boy was diagnosed with a genetic connective tissue disorder called Ehlers Danlos Syndrome. The condition causes fragility in the skin’s collagen and patients often have complications with hyper-mobility, easy bruising and tearing of the skin, detached retinas, dislocations and joint pain.
Carson can’t play contact sports or rough house with his friends, yet he never asks why he has to have this rare tissue disorder while other kids don’t. Because of extremely sore joints, he can’t walk for long periods. He has a heart murmur and his aorta is enlarged which prevents him from any heavy lifting or exerting himself. For Carson, bruising can turn into bursitis with the bruise falling off leaving an open wound that can take up to six months to heal.
“With Carson not being able to do things like other kids, I try to make every day fun for him,” says Carla. “He’s so excited about his new go-kart with pedals because he can pedal without the chance of falling and tearing his skin.”
Despite Carson’s struggles, he has found low-impact alternatives to staying active and healthy. He loves showing off his flexibility and is currently in level eight swimming, which is easy on his joints. A true champion, he is always happy and never complains about what he can’t do. Thank you for raising funds to help kids like Carson get the best care possible!