Boy With Skin As Fragile As Butterfly Wings Will INSPIRE You With His Uplifting Message
Fourteen-year-old Jonathan Pitre dreamed of becoming a professional hockey player. But for the Russel, Ontario, teen, sports—professional or recreational—would never be an option. Jonathan was born with Epidermolysis Bullosa (EB), a rare illness that causes the skin to be extremely vulnerable, causes sore and painful blisters, and cripples the body.
He's called a "butterfly child," because his skin is as fragile as a butterfly's wings. In a new interview with TSN, Canada's leading sports network, Jonathan opens up about his daily struggle with the condition. Every day he experiences excruciating pain, and every other day, he must treat his blisters with a bath and a full body wrap. The entire process, shown in the video above, can take up to three hours. For a long time, Jonathan thought he was the only person suffering from the condition. Then he was invited to a Toronto EB conference in 2012 that changed everything.
"I had never met anyone with my condition. I had never had any explanation. I had never known there was anyone else. I knew that I wasn't alone anymore. I knew since then that I was going to become an ambassador. I want to start helping other people with EB," he explained.
In October 2014, Jonathan made his story public in a feature for theOttawa Citizen. The story went viral and got the attention of Bryan Murray, general manager of the Ottawa Senators. On November 20, 2014 Murray brought Jonathan on to the team to serve as scout for the day at an Ottawa Senators game. He signed a professional contract, answered questions for the media and hung out with players after the game. Since then Jonathan has helped raised over 0,000 dollars for EB awareness.
There is no cure for Jonathan's condition, and most people with EB do not live beyond the age of 30. When asked if he ever thinks about the future, he said it's definitely on his mind:
"EB is a cruel thing. And yes I have thought about it, for sure. How can't you? You know it's a reality. But I think I just push that aside, you know? 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—we can't know. But I'm not going to stop anytime soon. I'm going to keep going."
You can spread Jonathan's powerful message, too, by sharing this video.
Video: Jonathan Pitre: 2000-2018
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