LIKE THE WINGS OF A BUTTERFLY
Days before Jonathan Pitre would have turned 18, his mother completes his race among family and friends
Tina Boileau’s run was an exercise in optimism and boundless energy throughout Saturday’s five-kilometre event on Tamarack Ottawa Race Weekend.
Fittingly, the sunshine peeked through the clouds as she made her way back and forth through the crowds that were expressing endless support for her and her late son, Jonathan Pitre, as a source of inspiration and motivation.
For all that, Boileau was holding back tears as she crossed the finish line, acknowledging a whirlwind of “bittersweet” emotions.
Saturday was originally supposed to be a welcome-home event for Tina and Jonathan following his arduous medical journey, including an experimental stem cell treatment, to deal with his epidermolysis bullosa (EB). Unfortunately, the Butterfly Child, so called because of the severe sensitivity of his skin, died in a Minneapolis hospital on April 4. He would have turned 18 on June 2.
Boileau said Saturday she was simply doing what Pitre would have done, carrying on to draw awareness and funds for the others also dealing with so much pain.
“Jonathan started this wave,” she said, moments after finishing the course with her daughter, Noemy. “He would want us to keep going. Unfortunately, he left us too early. But we can still really accomplish his goal. My daughter is with me. I wouldn’t want to finish with anyone else. We’re still a family. We just miss Jonathan. It’s bittersweet, but what can we do?”
We could all hope to try and keep up to her pace. Or at least half of it. Her enthusiasm and positive perspective is contagious. You could even say she floated through Saturday’s course like a butterfly, making sure she talked with everyone who came out to support her and Jonathan: the fast runners, the joggers, the walkers and those in wheelchairs.
The official race bibs, worn by all the participants in the five-km event, were adorned with a butterfly logo and the initials JP.
After signalling the horn to start the race for the streams of participants — from fastest to slowest — Boileau hooked up with the last of the 60-odd supporters from DEBRA Canada who were sporting white T-shirts sporting Jonathan’s picture and his inspirational quote that he wanted everyone to hear: “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.”
Boileau began the event alongside Evan Prescott, the eight-yearold from Montreal who Jonathan had seen as a kindred spirit because the two shared so many similar experiences. Prescott uses a wheelchair and, due to the skin sensitivity in his feet, he’s often forced to walk on his knees. Prescott carried an “I love you, Jonathan” sign as he was wheeled through the course.
“I was able to spend a lot of time with him and I got to know him a lot better,” Boileau said.
From there, Boileau sprinted ahead to catch up with the running part of her support group, exchanging pleasantries. Minutes later, she sprinted back. The same story played out three or four times. All told, Boileau might have covered 10 km herself.
“She’s unmatched,” said Yandy Mcacabuag, Evan Prescott’s mother. “She’s unlike anyone I’ve ever met. When you are with her, you are star-struck by her presence, stunned really. And Jonathan was the same.”
Asked about how she keeps on going and going, despite the setbacks and hardships — one of the Debra Canada crowd compared her to the “Energizer Bunny” — she shrugged her shoulders.
“I don’t stop,” she said with a laugh. “I’m a busybody. But just look around here. Everyone is smiling. They want to be here. It’s such a great community. We have received so much support.”
Boileau says she was also encouraged by people who were unaware she was involved in the event until they saw her on the course. Jonathan, a passionate Ottawa Senators fan who became friends with Senators captain Erik Karlsson, was a source of inspiration for so many because of his enthusiasm for life, despite constantly being in pain.
“I stopped for a drink at a water fountain and somebody said, ‘Wow, you’re Jonathan Pitre’s mom,’ ” Boileau said.
She also received a stream of thumbs-up from elite runners when she sent the elite runners off. “People yelled, ‘ We’re running for you.’ That felt good.”
Boileau, Jonathan and Noemy all took part in the 2016 race weekend, but mother and son left for Minneapolis a few months later, with Jonathan undergoing a variety of exhaustive treatments and surgeries, including the stem cell transplant, which was aimed at reducing his pain.
But after being admitted to hospital to deal with a fever in early April, his blood pressure dropped, his breathing became more difficult and he was transferred to intensive care. His body didn’t react well, with complications that included kidney failure, and his lungs filled with water. Boileau says she didn’t want to see him suffer any longer.
Boileau said the two had always talked about returning to make an impact on race weekend, recognizing it as a significant event where they could catch up with friends and family. In the process, they would also draw attention to the disease and for the fundraising effort by DEBRA Canada.
Before race day, event donations to DEBRA Canada, the charity that supports those who suffer from EB, had reached more than $7,000.
“Jonathan started this,” Boileau said. “He would want us to keep doing this. I know he would be proud of this. There are still kids and young adults with EB who need help.”
Jonathan started this. He would want us to keep doing this.
TINA BOILEAU