Known as the 'Butterfly Child', this Canadian boy is fighting a disease you’ve never heard of before

Jonathan Pitre has been a fan of ice hockey since he was young. Unfortunately, he was forced to stop playing as his Epidermolysis Bullosa made the recovery periods too painful.

A lifelong burden

Thisextremely rare and incurable genetic disease stops Jonathan from leading a normal life, as even the slightest contact or rubbing causes his skin to blister, making all types of activities really painful. For example, when bathing, all of his bandages have to be removed before new ones can be put on which causes him pain. Even eating can be difficult, as his throat is also affected by the same problem.

In 2012, he was able to go to a conference about the disease, where he suddenly discovered that he was not the only one to experience this kind of pain. So he immediately decided to become an ambassador, in order to raise awareness of EB and to help people like him. There was an article that showed pictures of his injuries and it went viral in his home town of Ottawa.

This article drew the attention of his favourite hockey team, the Ottawa Senators, who invited him to attend one of their matches as their coach for the day.

A hopeful future

Since then, Jonathan has raised more than £55,000 to help people with Epidermolysis Bullosa. Even though he knows thatpeople with this disease rarely reach 30, Jonathan is confident about the future and wants to keep progressing, little by little, like any other person.