Sometimes, it’s those who face the most adversitywho are the most remarkable of all.

Fourteen-year-old Jonathan Pitre from Russell, Ontario is an avid hockey fan. He’s always dreamed about playing the game… but he’s never had the chance.

Jonathan suffers from Epidermolysis Bullosa (EB), a rare genetic skin condition commonly referred to as “the worst condition you’ve never heard of.” Children with EB are known as “butterfly children” due to their fragility, and tragically, there is no cure. His skin blisters and tears at just the slightest touch. As a result, Jonathan has spent his entire life in excruciating pain. To help manage his condition, Jonathan and his amazing mom Tina must endure the most painful process of Jonathan’s day — his bath. During this daily four-hour regime, Tina wraps her son in bandages to ensure he doesn’t get infections.

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 EB, and heightening our awareness of the condition.

“It gives you a new perspective, think of what you do have, think of all the happiness around you, think about all the love. Every day is a battle and every day is a battle won. This is me, it’s how I’m supposed to be so I deal with it.”

Jonathan is such an inspiration. If you agree, please SHARE this video with your friends on Facebook.