The Story of 14 Year Old Jonathan Pitre Is One Of Inspiration You Will Not Soon Forget

By Jack Day

“When you dream, what do you dream about?”
For 14 year old Jonathan Pitre the answer is an easy one: Sports.

“I would play sports all day, and I would not stop. I would be the most fit person in the world.”

Jonathan dreams about sports because he is physically unable to play any due to a rare, but horrible skin disorder called Epidermolysis Bullosa (EB). He was born with the debilitating disease that makes his skin as fragile as the wings of a butterfly, earning him the nickname “The Butterfly Child.” Besides the excruciating pain it causes, the condition leaves Jonathan’s body constantly prone to infection as he is covered in open wounds from the ceaseless tearing. There is no cure for EB, only the hope that the symptoms improve with age.

Jonathan’s mom Tina has had double duty as his nurse since birth and her dedication to her son has rubbed off on him it seems. In addition to being an ambassador for DEBRA Canada, a non-profit organization dedicated to the family support system of those living with an EB family member, Jonathan has “the heart of a warrior.”

“We are very much stronger than we appear…The strength comes from the people around me because they do believe in me, that I can get through it.”

When he was invited to an EB conference in 2012 Jonathan was introduced to others who also suffer from the same condition and it opened up his eyes for the first time. He had no idea that so many people out there were just like him. Since then he has gone on to be the face for those stricken with EB. And in November of last year his favorite hockey team, the Ottowa Senators, even signed him as an official Scout for the day.

As for the future, Jonathan says this,

“Day by day, step by step. You never know what the future holds. I may live to hundred. You can’t know. I just know I’m not gonna stop anytime soon.”

Please don’t ever stop Jonathan!

What do you think about Jonathan’s story? Just like he said, “EB is a cruel thing,” but he has found the courage and strength to live each day as it comes and not give up on living. What an inspiration this young man is, not just for being so brave, but for relaying such amazing messages of hope. Please share your comments and thoughts with us.

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