14 year old Jonathan Pitre is not just an ordinary hockey fanatic. He is a butterfly child. Butterfly children are called as such because of the skin condition they have. They are born with Epidermolysis Bullosa, or EB, which is one of the most painful and rare genetic disorder. Their skin is compared to butterfly wings, which is too fragile that even a slight friction can cause blisters or tears.
Jonathan struggles everyday. He feels pain when he eats. He managed to do some sport activities in the past but had to face severe consequences afterwards. He takes a bath every other day and this is the most agonizing activity he needs to undergo.
Even though he has this condition, Jonathan is full of hopes and dreams. He is a boy full of determination. He inspires a lot of people he meets and knows his story. He has become an ambassador for DEBRA Canada, a non-profit organization and charity that supports EB and its awareness.
He is truly inspiring. Share the video below if you agree.
image source:
http://xn--tvberregional-xob.de/wp-content/uploads/2014/11/Krankheit-Epidermolysis-bullosa-EB-von-Julie-Oliver-Ottawa-Citizen.jpg
video source:
https://www.youtube.com/watch?v=iuYxGtuBSgk
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