An ode to Jonathan Pitre
the Butterfly Boy
A poetic tribute to a remarkable autoimmune disease warrior
By Wanda Potrykus
He desperately wanted the most normal of things. Friends. Hockey. Birthday parties. Dog walks. A driver’s licence. A day without pain.
Andrew Duffy, Ottawa Citizen, April 6, 2018
There is much outpouring of grief across Canada for this courageous young man and I could have written yet another obituary but those, far more qualified have already done this extraordinary person far more than justice than I could in this respect. So, I opted to write a poetic tribute to a fellow autoimmune disease warrior, who, like I do, loved science fiction and the shimmering magic of the aurora borealis. For Jonathan, an ode to a new star.
A Star Called Jonathan
April 6, 2018
On Wednesday last… I like to think… a bright new star has graced the firmament… its name is Jonathan.
Long suffering, but not strong, except in will and graciousness, immune response mutations had from birth, dealt him a cruel, unenviable slight, for he dreamed of seeing the northern lights… but his health prevented him from travelling that far… his lifelong fight was against a cruel disease, earning him the name of Butterfly Boy… due to, you see, the fragility of his dermal covering.
Although, in spite of a life of strife and pain he found his joy… at the age of twelve… in his goal to publicize and raise funds for research into EB – epidermolysis bullosa… one of the most… painful diseases known to modern medicine. No cure, he had to endure… unsure of what the future spelled out for him… until a stem cell transplant held out hope… but his weakened body couldn’t cope with the subsequent infections… and, in spite of all his doctors’ attentions and his Mum’s, loving, oh so careful, administrations… he succumbed… last Wednesday night… his lifelong fight was over…
He could now, throw off his protective covers and take flight… into the firmament… to become no longer Butterfly but Cosmos Boy… oh joy… pain-free, in spirit form… he could travel freely to the stars, as he had often dreamed.
‘A wave gets bigger and bigger. I want to make sure that… when I leave that wave is big enough to keep going on its own.’
Reamed with open sores, gored by constant pain, his was a life where he was ostracized by other kids, unable to mingle, or engage in rough and tumble, or play sports, especially hockey, he’d learnt instead to thrive in an adult world… of thought and introspection, not of action. Gibson the dog was his self-proclaimed therapist… his listening partner… his favoured reading was a list of science fiction books…
Today… look… at last… it’s as he had wanted… he’s part of the vaunted cosmos that had forever intrigued and called out to him. He’d let us know he’d always imagined EB kids, after they died, would become bright lights dancing, flying high up in the sky. This is why I like to think of him out there in the void… devoid, not of love… but of the pain and strain of trying to make his way through, in a body that that hurt, and curtailed, failed, instead of sheltering, him.
In his short life, his struggle and his fortitude touched the hearts of many. His hockey heroes reached out and tried to fill the void of non-existent childhood friends. I like to think he now has endless friendly, youthful spirits that surround him and make him laugh and teach him how to swoop and play until the day he meets again, his Mum, his family, his friends, his dog… those who knew and loved his unquenchable fire and his great desire to live… and to give to others.
‘Jonathan fought long and hard, and was extraordinary at raising awareness for all those affected by EB… All of us here at DEBRA Canada are extremely saddened at the loss of our beloved ambassador Jonathan… ‘
Debra Canada statement, April 6, 2018
Jonathan Pitre… warrior spirit… rest in peace… your legacy is safe… the wave you launched is large enough to go on its way, growing ever larger, until it breaks upon the distant shore it’s headed to… where there’s a cure for EB and all auto-immune diseases. So, your work here is done… go have the fun you were entitled to… but missed out on, in your short but meaningful sojourn here.
We shed a tear, and more, of course, how can we not? Your light has not been diminished, although your time with us is finished, your dream will live on, by those inspired by your drive, and so it is we’ll keep your work alive. Thanks Cosmos Kid, you did great.
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For those wishing to support the work of the late Jonathan Pitre, contact DEBRA Canada at debracanada.org, the charity for which Jonathan Pitre garnered so much attention and raised so much.
Wanda Potrykus is a writer, editor, translator and poet. A graduate of McGill, she has spent most of her career in marketing communications, PR, event and media relations specializing in international aviation, telecommunications, education and the marketing of the arts.