“Even when I’m sleeping, I still feel that pain. The pain is like somewhere inside my head and I can always know it’s there. It’s always pushing me to my limits and it’s always pushing me past my limits.”1
~ Jonathan Pitre
TSN: People with your condition, they call them Butterfly Children. Why do they say that?
Jonathan PITRE: They call us butterfly children because our skin is as fragile as a butterfly’s wings.
Fourteen-year-old Jonathan Pitre from Russell, Ontario suffers from Epidermolysis Bullosa (EB), a rare genetic skin condition commonly referred to as “the worst condition you’ve never heard of2“. Jonathan was born with EB, and has spent his entire life in intense pain.1
Despite his daily challenges, Jonathan’s strength, character and courage is unlike anything we normally see in the world.
The world was first introduced to Jonathan Pitre, now 14-years-old, last year in an amazing article by Ottawa Citizen3 – who began by writing: “Nothing, but nothing, is easy in the life of 14-year-old Jonathan Pitre — save for the sleep that descends on him each evening in a cloud of methadone.”
His skin is so sensitive that his body must be wrapped in gauze to protect it from the mildest friction. Even the brush of a bed sheet can cause another burn-like blister. Wounds now cover most of his body; more blisters plague his mouth and throat.
I have a great passion and interest in reading, researching and sports. These three subjects are number one in my vocabulary. I am a book worm; my favourite kinds of books are sci-fi and fantasy. Reading lets me forget about everything, and lets my imagination run free. …
There is so much I want to do and accomplish… one thing I’d really love to do is to go on a family vacation to see the Northern Lights. I’ve been doing a lot of research on it, and apparently the view from Alaska is incredible! That is something I would love to see in my lifetime.
What I feel is truly important in my life is living every second I can with my family (including my dogs, Gibson and Molly). … I am determined to win this war against EB, I will never give into the pain.5
Last November, Jonathan was named an honorary scout for his favorite hockey team, the Ottawa Senator, signing a one-day contract and watching the game in a private box alongside Asst. General Manager Pierre Dorion. Ottawa Citizen reported that Jonathan was also “formally welcomed to the club at a news conference hosted by Senators general manager Bryan Murray” and had the opportunity to meet with players and staff.
In a follow-up story to their original piece on Jonathan, Ottawa Citizen reported that there was a “huge, heartwarming public response to that story”:
More than $32,000 has already been received by the EB charity, DEBRA Canada. A chunk of that will be used to finance Jonathan’s dream trip to see the Northern Lights with his family. The rest, Jonathan has announced, will go toward helping other EB patients fulfil one of their own dreams.6
Ottawa Citizen adds that:
- Two airlines, Air North and First Air, have offered to fly him to Yellowknife or Whitehorse to see the Northern Lights.
- Officials from the Ottawa Senators, TSN and Sportsnet have reached out to him given his interest in hockey and sportscasting.
- Readers in Canada’s North have offered him accommodation in their homes.
- Students from his Embrun Catholic high school have added him as a friend on Facebook.
- Others have offered him yoga lessons, naturopathy and friendship.
- Michael Hyatt, co-founder of the high-tech firm Bluecat Networks, announced that the Hyatt Family Foundation will match up to $16,000 in new donations to DEBRA Canada.
“I never expected all of this,” Jonathan said in an interview. “It’s unreal: I still have a hard time believing it. But I’d like to thank everyone for helping,” adding “It’s just an honour to have all these people wanting to help. I’m just a simple boy and I don’t get how all this is happening in front of my eyes.”
You can watch a TSN Original film, “The Butterfly Child,” below, followed by “Fight Like A Butterfly: The Jonathan Pitre Story.”
To learn more, or to donate to families affected by EB, go to http://debracanada.org/
1. TSN Original: The Butterfly Child, http://www.myvidster.com/video/40236615/TSN_Original_The_Butterfly_Child (accessed April 15, 2015).
2. What is EB? | Debra of America – Dystrophic Epidermolysis .., http://www.debra.org/whatiseb (accessed April 15, 2015).
3. Butterfly child’ dreams of the Northern Lights (with video .., http://ottawacitizen.com/news/local-news/butterfly-child-dreams-of-the-northern-lights (accessed April 15, 2015).
4. DEBRA is an international medical research charity dedicated to the curing of Epidermolysis bullosa with national groups in in over 40 countries.
5. Butterfly Ambassador Jonathan Pitre – DEBRA Canada, http://debracanada.org/butterfly-ambassador-jonathan-pitre (accessed April 15, 2015).
6. ‘It’s unreal!’ Jonathan Pitre can’t believe the public .., http://ottawacitizen.com/news/local-news/its-unreal-jonathan-pitre-cant-believe-the-public-response-to-his-story (accessed April 15, 2015).