Jonathan Pitre is 14 years old. He was born with Epidermolysis Bullosa. Since his birth, Jonathan has not known a day, or even a moment, without pain. But, Jonathan’s story is not about his pain, and once you meet him you will be forever transformed.
Epidermolysis Bullosa (EB) is a rare genetic disease that interferes with the normal production of connective tissue, resulting in a defect in the wall between the epidermis and the dermis. The result is that the skin is extremely fragile and blisters easily, even from minor disturbances such as touching or the friction from clothing. Blisters can even form inside the body—in the mouth and throat. Children with EB are called “Butterfly Children” because their skin is as fragile as the wings of the butterfly.
Jonathan is straight with you. He does not try to tell you that he feels no pain, in fact he does and you can see it on his face and hear it in his voice when he tells you his story. Every other day, he must change his bandages, a process that takes him and his mother three hours to accomplish. It is excruciating, requiring a will of steel from both of them. But Jonathan’s story is about a little boy who never let go of his dream to be a professional athlete. His room is filled with all the jerseys and paraphernalia of his favorite teams, primarily hockey. Jonathan’s condition is serious and he knows that his life expectancy is short. He knows this, but it does not hold him back.
One day Jonathan was invited to a medical conference on the subject of EB and for the very first time in his life he met others with the same condition. No longer feeling alone, Jonathan felt empowered to share his story with the world. Last spring, the Ottawa Citizen published his story not only in words, but also with photos—Jonathan’s pain in pictures. When his local ice hockey team, the Ottawa Senators read the story, they were so inspired they were compelled to find a way to help Jonathan. And this opened the door to Jonathan’s long-cherished dream. Jonathan was recruited to be a team scout. Jonathan inspired the players, coaches, professional scouts and of course the world-wide audience. But, Jonathan had a second dream. Once he learned that there were others like him, he knew he had to become an ambassador and help others suffering with the disease. Since his opening day with the Ottawa Senators, Jonathan has helped to raised $100,000 for EB awareness.
Jonathan Pitre’s story is one of honesty and courage. He teaches us how to see every obstacle as a challenge that can be turned into the most beautiful gift imaginable. Like the caterpillar that becomes the butterfly, Jonathan teaches us how to emerge from our constrictions and fly.