Teen With Rare, Painful Skin Condition Will Inspire You With His Strength

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When 14-year-old Jonathan Pitre wakes up each morning, he knows his day will be filled with pain.

Diagnosed with rare and crippling skin condition, Epidermolysis Bullosa (EB), at birth, it hurts when he walks, eats and bathes, according to Canada's The Sports Network, which featured Jonathan in the video "The Butterfly Child." Eating causes blisters inside of his throat, and every other day he and his mom go through the excruciating process of bathing him, removing all of the bandages from his body and putting the dressing back on his skin to prevent infection.

When asked if he ever dreams of one day that's pain free, Jonathan said, "I dreamed of it. Even when I'm still sleeping I still feel that pain. The pain is like somewhere inside of my head that I can always know is there. It's always pushing me to my limits and it's always pushing me past my limits."

People with his condition are referred to as "butterfly children," with Jonathan explaining, "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 heart of warriors. We are very much stronger than we appear."
As for where Jonathan draws his strength, he said, "That strength comes from the people around me because they do believe in me that I can get through it."

Jonathan thought he was alone in his struggles with EB until he was invited to an EB conference in Toronto in 2012. It changed his life, and he went on a quest to help other people with his condition. The Ottawa Senators hockey team also caught wind of Jonathan's inspirational story and made him a scout for a day in November 2014. This was a big deal for Jonathan, who is a huge hockey fan but can't play the game because of his condition.
Nashville Predators v Ottawa SenatorsStill, in spite of the adversity he faces, he is keeping his head up. "EB is a cruel thing," he said, referencing the life expectancy of those with EB (around the age of 30). "I've thought about [the future] for sure, but I think I just push that aside. I'm here and I'm gonna go step by step, day by day and you never know what the future holds...I'm gonna keep going."

Watch the full video of Jonathan's story above.

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