Born With a Crippling Skin Condition, This Boy Truly Inspires With His Determination

Like many boys his age, 14-year-old Jonathan Pitre dreams of playing sports all day, especially hockey, and never stopping. Jonathan suffers from epidermolysis bullosa (EB), a rare condition that leaves him in constant pain, with skin that blisters and tears. He is called a "butterfly child," and when asked why children with EB hold this nickname, Jonathan responded, "They call us butterfly children because our skin is as fragile as a butterfly's wings. As much as a butterfly is pretty, yet gentle, we have the hearts of warriors. We are very much stronger than we appear."

In October 2014, Jonathan put his story out to the world and bared his wounds in the Ottawa Citizen. The manager of his favorite hockey team, the Ottawa Senators, saw the article and decided to do anything he could to help Jonathan raise more awareness, which included inviting him to a game and making him a scout for the day. Since then, Jonathan has raised over $100,000 for awareness of this incurable disease (meanwhile, others are raising money for him).

Despite the crippling pain he faces every single day, he is determined to keep on living, though most butterfly children do not live past the age of 30. He says of the future, "I'm here, and I'm going to go step by step, day by day, and you never know what the future holds. I may live to 100, but you can't know. But I'm not going to stop anytime soon, I'm going to keep going."