Jonathan has a rare genetic skin condition called Epidermolysis Bullosa (EB), often referred to as “the worst condition you’ve never heard of.” Children with this condition are called “Butterfly Child” because their skin is as delicate as the wings of a butterfly. He was born with the condition, and has never known a day without pain. He and his mother Tina go through the excruciating task of changing his bandages every other day, and as you’ll see in the video, it’s clear this young man has an extremely high tolerance for pain and an even greater outlook on life.
While having a bath for most of us mean relaxing and pleasure for this child is worse than a nightmare... he must treat his blisters with a bath and a full body wrap. The entire process, shown in the video below, can take up to three hours.
For a long time, Jonathan thought he was the only person suffering from the condition. Then he was invited to a Toronto EB conference in 2012 that changed everything.
In October 2014, Jonathan made his story public in a feature for the Ottawa Citizen. The story went viral and got the attention of Bryan Murray, general manager of the Ottawa Senators. On November 20, 2014 Murray brought Jonathan on to the team to serve as scout for the day at an Ottawa
Senators game. He signed a professional contract, answered questions for the media and hung out with players after the game. Since then Jonathan has helped raised over $100,000 dollars for EB awareness.
Credits: TSN Tube
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