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Dublin: 12°C Tuesday 29 September 2020

Teenager living with the worst disease you've never heard of gets over seven million hits on YouTube

Jonathan Pitre has become an EB ambassador, raising $100,000.

Source: TSN Tube/YouTube

JONATHAN PITRE IS a 14-year-old from Canada who wants to be a sports star.

He is sports obsessed and wants to spend all day playing. So, in most ways, he’s not unlike many boys his age.

However, Jonathan was born with epidermolysis bullosa (EB for short).

The rare genetic condition makes any contact agony for sufferers. Eating causes Jonathan to get blisters in his mouth, any friction causes his skin to tear.

Last year, a local paper piece about him went viral and led to Jonathan being signed as a scout for the night by the Ottawa Senators NHL team.

His story was picked up by Canadian sports network TSN, who made a 12-minute feature on “The Butterfly Child”.

The piece, which has been viewed 7.2 million times shows the excruciating reality that sufferers of EB live with every day, as Jonathan has his dressings changed.

PastedImage-98428 Jonathan getting his dressings changed.

In the moving video, he says that the strength to keep going comes from the people around him.

“They believe in me, that I can get through this.”

He said that meeting other children with EB made him realise he “wasn’t alone” and he has helped raise $100,000 for EB awareness since November.

Jonathan says he is aware that most EB sufferers don’t make it to 30.

EB’s a cruel thing.
Yes I’ve thought about it for sure, how could you not? You know it’s the reality.
But I think I just push that aside. I’m here and I’m going to go step by step, day by day. We don’t know what the future holds, I could live to be 100.
But I’m not going to stop any time soon, I’m going to keep on going.

Around 300 people in Ireland suffer from the painful condition.

If you would like to help EB Awareness in Ireland text BUTTERFLY to 50300 to donate €4 to DEBRA Ireland.

Read: Why are the RTÉ panel, Conor McGregor and Jonny Sexton releasing butterflies this week?

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