What a fighter! A young boy from Russell, Ontario was born with a rare, painful genetic disorder, but his hopes and life will inspire you.

Jonathan Pitre is a 14-year-old boy from Ontario. He is just like any other young kid - he loves hockey and life, but there is one difference - he was born with an incredibly painful skin condition that makes day-to-day living difficult.


Monarch Butterflies
(Photo by Susana Gonzalez/Newsmakers)

Pitre was born with Epidermolysis bullosa (or EB) - a rare and extremely painful skin disorder. Children with this condition are called Butterfly Children because they're skin is so fragile, fragile like butterfly wings. Even the slightest friction on the skin can cause painful blisters, and eating will cause blisters in the mouth. There's no cure for the disorder, and most people who have it don't live to be 30.

In the inspirational video, Pitre shows you what everyday life is like for him. The hardest part of his day is having to take a bath and change his bandages (which is extremely painful as well). Pitre also talks about his love of hockey. He always wanted to play, and when he was younger he would. But the recovery from each time he was out there just got to be too much.

It sounds like a really sad story, right?! Well, Pitre then shows us when everything changed. He was invited to a EB Conference in Toronto. There, he met others with his same disorder, and he knew he wasn't alone. Pitre then decided he wanted to be an Ambassador - helping those with the condition, and teaching others about it.

To kick off his plan, in 2014 he put his story out there for the world to see. Now, this is where his love of hockey ties back in. The General Manager of the Ottawa Senators, Bryan Murray got a hold of the story, was moved by it, and wanted to help out.

That November Pitre was invited to attend an Ottawa Sentors game. He was made a scout for the day, signed a contract, and talked with the media during the press conference. He even got to meet with the players, get autographs, take pictures, and just feel like a part of the team.

It's a heart-felt, inspirational video. Yes, it is a little long, but the story is worth every second of it. WARNING: Viewer discretion is advised - some of the images are pretty graphic.


Since Pitre's day with the Ottawa Senators, he helped raise over $100,000 for EB awareness. A 14-year-old going through so much in his life, and he still has his heart in the right place. What an inspiration!



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