The Butterfly Child

Published On April 20, 2015 | By Amberli | Afternoons

This is one of the most beautiful, yet heartbreaking videos I have ever watched..

It’s about a 14-year-old boy named Jonathan. He’s a huge hockey fan but he suffers from one of the most painful conditions known to modern medicine. It’s called Epidermolysis Bullosa or EB. It is a rare genetic skin condition that is 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. He is pretty much covered from head to toe in bandages.. and every other day him and his mom have to replace the bandages.. which is a very painful process.

Sometimes kids with EB are called Butterfly Children because their skin is as delicate as a butterfly’s wings. But this boy has so much strength, and character, and courage. He dreamed for so long of playing hockey, and he can’t because of this terrible condition.

TSN did a great story about Jonathan. It’s painful to watch, but it’s very inspiring at the same time.

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