If he had his choice, 14-year-old Jonathan Pitre would be playing sports all day long, but unfortunately, the young boy can't just act like a normal kid — because he was born with epidermolysis bullosa, a rare skin condition that causes constant, overwhelming pain.
"Even when I'm sleeping, I still feel pain," he admits. "The pain is somewhere inside my head and I always know it's there. It's always pushing me to my limits and always pushing me past my limits."
Jonathan as a child. (Photo Credit: YouTube)
Even just the simple act of having something to eat causes Jonathan pain, due to blistering that starts in the back of his throat.
"Our little pleasures of life, he doesn't have that. He can't join the gym, he can't play any sports," his mother said, adding that he's always been a hockey fan.
In October 2014, he shared his story and bared his wounds in the 'Ottawa Citizen,' and shortly after the article went viral, the manager of his favorite hockey team invited him to a game and made him a "professional scout for a day."
Jonathan at the hockey game. (Photo Credit: YouTube)
Since then, Jonathan has helped raise more than $100,000 for EB awareness — and although most patients with this condition typically don't live past the age of 30, he's still determined to remain positive and fight on.
"I'm here. And I'm going to go step by step, day by day. I may live to 100. I'm not going to stop anytime soon," he said.
Learn more about Jonathan's story in the video below:
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