Lifestyle

This Brave Boy's Perseverance Through Painful Disease Will Inspire You (Video)

by Adam Silvers

Jonathan Pitre is intently watching the 2015 Stanley Cup Playoffs like any other hockey fan, except there's one huge difference.

The 14-year-old, who is a diehard Ottawa Senators fan, has suffered from Epidermolysis bullosa since birth.

EB, as it's commonly known, is one of the most rare and painful genetic conditions known to man.

Since Jonathan's skin is as fragile as butterfly wings, he and other kids with EB are referred to as Butterfly Children. Friction to any part of his body causes blisters; eating food does the same to his throat.

The pain Jonathan experiences is so bad, he feels it even when he sleeps. The process of bathing and bandaging, which is performed by his mom, Tina, can take up to three hours.

But, Jonathan finds the strength to get up every morning because of the positivity he feels from the people around him -- that, and the joy he gets from watching hockey.

Last November, the Ottawa Senators got wind of Jonathan's story and invited him to take in a game as an honorary team scout. Jonathan, who is an avid student of the game, took in the action with team officials before heading to the locker room to meet his heroes.

Following his visit with the Senators, Jonathan helped raise over $100,000 for EB.

At the moment, the disease has no cure, and most children with the condition don't make it past 30.

Jonathan knows this and accepts it, but he refuses to crumble. He perseveres with unbelievable positivity.

This video is graphic and difficult to watch at times, but it's nothing compared to what Jonathan Pitre goes through every day of his life.

Citations: TSN Original: The Butterfly Child (YouTube)