In Russell, Ontario, fourteen year old Jonathan Pitre is an avid hockey fan and has dreams to be part of his favorite team, the Ottawa Senators. But he will never have the chance. Jonathan is suffering from a rare and painful genetic skin condition called Epidermolysis Bullosa (EB). Also known as the “Butterfly Child” Jonathan’s skin is literally as fragile as a butterfly’s wings. His condition is referred in this video as the “the worst condition you’ve never heard of.” Despite his condition, his personality and views of life are astonishing. He gets his strength from the people around him and he is even the ambassador for DEBRA Canada, a non-profit organization that supports families with Epidermolysis Bullosa. Such an amazing story! Click the video below and watch how Jonathan lives each day with courage!
It’s heart breaking to see a child with such a horrible disease. However, Jonathan doesn’t see his condition to be a hindrance to his dreams! Truly inspiring! How as this video inspired you?
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