Most people in Ottawa have heard about our Butterfly Child," Jonathan Pitre, who is fighting one of the most horrific diseases anyone has ever heard of called Epidermolysis Bullosa (EB). It makes his skin extremely fragile, like butterfly wings. Recently, a second stem cell transplant was done. It is currently the only hope the 16-year-old has to lessen his excruciating pain. Jonathan's story ... has inspired true change in others. That change is creating even more ripples after he threw his stone into the pond by bravely speaking out about his disease. You see, when he isn't getting experimental treatment in the United States, Jonathan lives next door to singer-songwriter Tara Shannon. Tara ... wrote the song Butterfly Child that, together with TSN, helped propel Jonathan into the international spotlight. Across Canada and the United States, when being interviewed about her album, Tara now speaks about EB. She is doing what Jonathan wanted all along, to increase awareness about the disease and the need for research. Since releasing Butterfly Child, Tara joined the executive committee of Amazing People, which celebrates those doing great work in Ottawa while at the same time raising money for four charities. I think our Butterfly Child has created incredible change in our community simply by demonstrating what is possible when you don't give up. Jonathan's example has caused a ripple effect that is helping children he's never even met, and he's inspiring adults to do what needs to be done.
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