Butterfly Boy Raises Awareness Of Epidermolysis, Rare Condition That Causes Skin To Fall Off
At only 14 years old, Jonathan Pitre has already lived past more than halfway through his life expectancy. The Russell, Canada teen was born with epidermolysis bullosa, a rare genetic condition that causes his skin to blister and peel on a daily basis. However, despite his grim situation, Pitre is determined to live his life to the fullest and use what time he has left to spread awareness of his disease in the hopes of helping others.
Around 95 percent of Pitre’s body is covered with painful blisters, making even the simplest tasks near-impossible.
"In general, the wounds have gotten bigger, deeper, and they’re chronic wounds, which means they never leave," Pitre explained in a YouTube clip of a recent documentary on epidermolysis bullosa (EB). "They call us butterfly children because our skin is as fragile as a butterfly's wings," Jonathan told Canadian broadcaster TSN.
EB is an extremely rare group of diseases that cause blisters to form both inside and outside the body in response to even the slightest scratch or touch, Mayo Clinic reported. Most forms of this condition are genetic and the constant wounds also put those with EB at increased risk for skin cancer.
“Every time a wound doesn’t heal, or there’s a bigger wound, you’re concerned the cancer will get in there,” Jonathan's mom, Tina Boileau explained, as reported by The Mirror.
There are not cures or treatments for EB and doctors do not expect Pitre to live past 25. While the health condition is rare, affecting around one in 20,000 births, it's what Jonathan has managed to accomplish despite his handicap that is truly remarkable. According to The Mirror, Jonathan has personally managed to raise nearly $77,000 (100,000 CAD) for DEBRA, a research charity for those with the condition, in hopes of eventually finding a cure for EB — if not for himself, then for others with the condition.