ourteen-year-old Jonathan Pitre from Russell, Ontario is an avid hockey fan. He loves his hometown Ottawa Senators and always dreamed about playing the game. But he never had the chance.

Jonathan, a.k.a the “Butterfly Child,” suffers from Epidermolysis Bullosa (EB), a rare genetic skin condition commonly referred to as “the worst condition you’ve never heard of”. Jonathan was born with EB, and has spent his entire life in intense pain. To help manage his condition and prevent infection, Jonathan and his mom Tina must go through the most excruciating process of Jonathan’s day — his bath. Watch the video below to see what I mean.

Despite his daily challenges, Jonathan’s strength, character and courage — qualities we worship in our athletes — is unlike anything we normally see in the sports world. Jonathan is an ambassador for DEBRA Canada, a non-profit organization and charity dedicated to providing support for families affected by Epidermolysis Bullosa, and heightening Canadians’ awareness of the condition. Sometimes, it’s the kids who face the most adversity that are the most remarkable of all.
It’s heartbreaking to see someone like Jonathan in so much pain, but his attitude, courage and personality? Truly inspiring. If you agree, please SHARE this video with your friends on Facebook!