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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.
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.
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Jesus, what a horrible affliction. Poor kid.
The poor guy. His strength and determination is incredible. Really puts your own problems into perspective
What a brave boy. I remember seeing a documentary called The Boy whose Skin Fell off a few years ago about a man called Johnny Kennedy. Id never heard of EB before then. He was amazing but I cried my heart out for him. I think DEBRA Ireland is one of the most worthwhile charities there is.
I’ll never forget that documentary. I remember he had “don’t stop me now” play at his funeral. It was so sad. He was a lovely person. It always stuck with me.
Heartbreaking, what a brave young lad, life is so unfair sometimes.
This is heartbreaking. We really don’t know how lucky we are!
What a brave lad, keeps his chin up and keeps moving, his youtube account is letting everyone know what EB is great idea.
My heart just broke a little reading this. Such a brave and resilient lad.
Puts everything we moan and groan about into perspective.
When we’re uncomfortable and suffering from an acute illness we remember how lucky we are to feel ‘normal’ when we’re well again
Imagine never feeling well and pain being your normality
Poor poor boy. I hope they come up with something in the very near future he’s still only young.
The bravest Child I have ever seen.
He is some inspiration to us All.
This is the reason people defend ‘big pharma’ and the cost of developing treatments and drugs for ultra rare conditions…
Hopefully they can put the misery of this condition and others like it in the past soon.
As a parent, I found that very upsetting. The mental pain his mum must go through to see him like that is unimaginable. They are both incredible people and what they go through puts our petty little problems into perspective. He is such a tough young man with a great attitude. I wish them both the very best.
I’m in actual tears after watching this. Such a brave and inspiring young man, really puts things into perspective.
It’s awful to think there are 300 people in Ireland suffering with that. Dreadful.
A positive attitude while dealing with his painful condition daily. Great role model.
I saw the documentary about Johnny Kennedy a few yrs back. Had a profound impact on me. We think we have it bad but my God when u see the suffering of people with the AWFUL AWFUL condition. I don’t think we can ever understand what that pain is like. DEBRA is the Irish EB charity.
A few years back I remember a little Dublin lad on the telly he suffered from EB also. Poor little lad couldn’t move without being in so much pain he cried his little eyes out, he later died. I really hope that they can come up with something that can help these kids. No child should have to go through so much pain. The lightest touch can give them blisters.
What an amazing person we could all learn so much from him and his outlook on life ❤️
Wow.
I don’t comment too often on here, but just felt like saying how amazing I think this young lad is.
That’s terrible, but what an amazing inspiration to us all. How can I donate?
Seriously who is giving Red thumbs to the comments of support?
Please support DEBRA Ireland who provide vital care and support to children (and their families) similarly living with EB here in Ireland.
Poor kid
Pls pls like and share if you can thank you. X https://www.facebook.com/pages/A-FAN-trying-to-get-Jonathan-Pitre-on-the-Ellen-Show/1714614512099127?__nodl
Pls pls like if you can , such an inspiration to us all. This teenager has taught us all the power of love and strenght. X. https://www.facebook.com/pages/A-FAN-trying-to-get-Jonathan-Pitre-on-the-Ellen-Show/1714614512099127?__nodl.
Respect
Unbelievable bravery from the kid, a true hero.
There are many complimentary therapies and healers throughout the planet who could help this child, who have helped many men, women and children overcome afflictions.
Everyone knows of someone who has been helped by one.
Strange, how mainstream media does not cover many of these stories.
Sometimes conventional medicine is the most painful ineffective route.
Although I would never rule out anything that may help.
It sometimes helps, to keep an open mind.
If he were my child, I would leave no stone unturned, to find a cure.
Doctors normally try their best, however sometimes they just don’t have all the answers.
Many doctors go to complimentary therapists and healers themselves.
What’s wrong with my initial comment red thumbers??
To much faith in our trollies in corridors “health” system??
To much faith in our Aras Attracta “Care” homes??
Would you not have thought that his parents have exhausted every avenue available to them? We can never truly understand a situation such as this unless we’ve been through it ourselves
Maybe they have Catherine.
However there maybe other avenues that they are unaware of.
Maybe if we can understand how to avoid putting ourselves and our loved ones through situations like this, then we may not have to truly understand by experiencing.
The cured get little notice.
Or maybe no faith in snake oil charlatans making a fortune off desperate people.
If he was Irish he’d probably have to prove he was eligible for a medical card.
My son Nicky has RDEB like Jonathan-he’s on morphine 3x a day. I just published a book abt his life https://www.facebook.com/butterflychildbook
Is it really necessary to post this article due to the amount of YouTube views he has received. That could have been left out of the title!!
Oh boy, you think you have problems. An inspiring lad.
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