Fourteen-year-old Jonathan Pitre from Russell, Ontario is an avid hockey fan. He loves his hometown Ottawa Senators and dreamed about playing the game. But he 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." Jonathan was born with EB and has spent his entire life in intense pain.

Despite his daily challenges, Jonathan's strength, character and courage - qualities we worship in our athletes - is unlike anything we 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.

To learn more or to donate to families affected by EB, go to

TSN's James Duthie tells Jonathan's painful - and inspiring - story on SportsCentre and