The Butterfly Child | TSN Original

14-year-old Jonathan Pitre is an avid hockey fan who suffers from Epidermolysis Bullosa, one of the most painful conditions known to modern medicine. But his courage and determination to live is unlike anything in sports. To learn more, or to donate to families affected by EB, go to http://debracanada.org/

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.

TSN's James Duthie tells Jonathan's painful, and inspiring story. Viewer discretion is advised.