This video contains graphic imagery that may be upsetting to some viewers. While the images may be painful to watch, Jonathan’s story is simply too important to withhold. Jonathan is the definition of courage, refusing to see himself as a victim of circumstance. His story lends perspective to anyone who stands in the face of adversity.
14-year-old Jonathan Pitre from Russell, Ontario is a Butterfly Child. He suffers from a painful genetic condition known by doctors as one of the most rare in modern dermatology. Dystrophic EB results in a child being born with skin “as fragile as a butterflies wings.” It’s a tissue disease resulting in a weakness in the connection between the dermis and epidermis. Friction between the layers of skin results in the layers coming apart and large blisters occur daily.
Like many Canadian children, Jonathan dreamed of being a hockey player, but after briefly trying sledge hockey, the recovery time was simply too torturous. But Jonathan understands that being a professional athlete is just as much about how you handle yourself off the ice as you do on it. Jonathan has more endurance than any athlete to ever make the hall of fame.
With only 9 in 1 million persons being affected by the condition, Jonathan thought he was alone until he was invited to a EB conference where he met other children living with the condition. Jonathan is now the EB ambassador, bringing awareness about the condition to the general public and uplifting fellow sufferers with his bravery.
“As much as the butterfly is pretty and gentle, we have the heart of warriors. We are very much stronger than we appear.”
