Day 704: Northern lights dream comes true for brave ‘Butterfly Child’

Even amidst the painful and tiring task of washing and re-dressing all of his wounds - which takes four hours and must be done every other day - Tina and Jonathan laugh often and heartily.

Even amidst the painful and tiring task of washing and re-dressing all of his wounds – which takes four hours and must be done every other day – Jonathan and his mom, Tina, laugh often and heartily. Julie Oliver / Ottawa Citizen

I read this story the other day in tears.

Every moment of every day, this brave young man deals with more pain than many of us will see in a lifetime.

Ottawa’s Jonathan Pitre suffers from a rare genetic disease called Epidermolysis bullosa (EB). Sufferers are sometimes called “butterfly children” because of the vulnerability of their skin — as fragile as butterfly wings.

After I read the story in the Ottawa Citizen, I felt like I needed to help in some way. And thankfully the story gave the link to DEBRA Canada, an organization that helps support those living with EB (about 2,000 in Canada).

In case I needed even more of a “sign” that I needed to make a donation… “DEBRA” is actually my first name (slightly different spelling, but still….).

Turns out, the story struck a chord with a lot of people, including airlines, hotels and just average folks in the North who have offered to help Jonathan achieve his dream to see the northern lights.

Why the northern lights? “When we go up in the sky, I like to believe that we move on to a very pretty place. So by going to the northern lights, I hope I can get closer to all those that we have lost.” Wow.

And even more people have come forward to help. 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.

So far, more than $32,000 has already been received by the EB charity. Some of that will be used to finance Jonathan’s trip up North with his family. The rest, will go toward helping other EB patients.

“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.”

Here’s a link to DEBRA Canada.

 

P.S.
These northern lights are beautiful… and so are these harmonies. Enjoy!

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