There is a saying that even those that face the most adversities are the most remarkable of them all. A perfect example would be Jonathan Pitre. This 14-year old from Russell, Ontario, he always dreamed of playing hockey. You can say that he was an avid fan of the sport, but he’s never really had a chance because of his medical condition.
Jonathan has been fighting his battle against epidermolysis bullosa or EB. EB is a rare genetic skin disease which is commonly hailed as the worst condition you probably never heard of. Children suffering from EB are also called “butterfly children” because of their fragility. Unfortunately for those suffering from EB, there is no cure. Anyone who has epidermolysis bullosa has skin that blisters and tears at just the slightest touch.
As a result, this little boy spent his entire life in pain. His mother, Tina, always has to go through the most painful process in Jonathan’s daily routine, bathing him. This activity is a regular 4-hour regime that takes place in their bathroom. Tina would wrap her son in bandages every time to ensure that he wouldn’t get any kind of infection.
Despite all of these daily challenges, Jonathan’s character, strength, and courage never falter. These are the qualities that are typically possessed by athletes. His situation is unlike anything we would normally see in the world in general. But his disease hasn’t stopped him from enjoying the best out of life.
Jonathan is also the ambassador for DEBRA Canada. DEBRA Canada is a non-profit organization and a charity that dedicates time, effort, and energy to providing support for families that are affected by EB. Furthermore, it also aims to heighten our awareness with the struggles of people who are experiencing EB.