April 7, 2018 12:33 am

Alex Pierson: Ottawa’s ‘butterfly boy’ Jonathan Pitre who died at 17 was ‘the most inspiring person’

The young Ottawa-area man known as the "Butterfly Boy" has died at the age of 17. Jonathan Pitre had spent his life trying to raise funds and awareness for the rare and debilitating disease epidermolysis bullosa. Mike Le Couteur looks back on Pitre's life and legacy.

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Sometimes in life, someone crosses your path and leaves behind an indelible mark. For me, that was a 17-year-old boy named Jonathan Pitre.

This morning, I woke to the unexpected news that Jonathan had died. It took my breath away. I wasn’t expecting it because Jonathan was a fighter. A dreamer. He was eternally optimistic and frankly, the most inspiring person I had ever met.

I interviewed Jonathan six years ago… and have never stopped following his journey.

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READ MORE: ‘Butterfly boy’ with rare skin condition battling to find a cure

From the moment Jonathan came into this world, his life would be one of non-stop pain.

He was born with a very rare, and cruel skin condition. He had epidermolysis bullosa.

His skin was as delicate as tissue paper. Hence the name Butterfly boy. The slightest bump or scratch would tear his skin right open so for this boy, it meant a life of no playing. No kids games. No sports. No enjoying the simple pleasures of being a kid.

Instead, his every day would require hours of care; medicated sponge baths to fight off infection, his limbs and body gingerly wrapped to protect his skin.

And yet, despite the hardship, the isolation, the stares and finger-pointing, Jonathan remained kind — gentle, charming and happy. Most of all, he lived his life as a glass half full. He was grateful for every opportunity he had. He lived with purpose and determination. A brief encounter with this boy reminded us all that we really have nothing to complain about.

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Jonathan loved sports but of course, couldn’t play any. But as his story got out, the sports world put their arms around him so he would have a chance to live a dream. In particular, the hockey world took Jonathan into their hearts.

He wanted to be a sportscaster, so I called my friend over at one of the sports channels and told her his story and his dream.

Soon, he was holding a mic, and surrounded by sports lovers just like him. My friend would soon tell me how it had touched her life.

But his real purpose was becoming the face of the very disease that ravaged his life. He wanted others to know his story. He wanted to be a voice for others who were also fighting each and every day.

Jonathan fought valiantly. He had spent the last year of his life in Minnesota undergoing an experimental stem-cell transplant. It was his only chance at freedom from the cruel disease. It would be a year of risk: infection and miraculous achievement. His skin was actually growing. And then, like so many times before, he got an infection. His delicate body not up for the fight, Jonathan died on Wednesday.

Which brings me to the woman behind the boy — Tina — Jonathan’s mom. Her every waking moment in life was tending to “her boy Johnny.” She was his strength, his protector, his champion. And he was her warrior.

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His purpose – was her purpose. They walked every step in life together and now his fight will be hers to carry. But she won’t be alone. I, and many others, will happily walk forward with her.

When I interviewed Jonathan, he told me his other dream was to see the northern lights. Sadly, his body would leave that dream unfulfilled.

May death take you to those lights in the sky, butterfly boy. I will be looking up.

To find out more about EB, or to make a difference, go to DEBRACanada.org

Alex Pierson is the host of ON Point with Alex Pierson on Global News Radio 640 Toronto, 900 CHML and 980 CFPL.

© 2018 Global News, a division of Corus Entertainment Inc.

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