Mom-son day ‘was our plan,’ Boileau says

In a more just world, Jonathan Pitre would be alongside his mother for this Saturday’s 5K event on Tamarack Ottawa Race Weekend.

This was the weekend they had circled on their calendar during Jonathan’s long and arduous medical journey in Minneapolis, Minn. It was to be their first big event upon returning home to Russell after two years and two stem cell transplants.

“That was our plan,” said Jonathan’s mother, Tina Boileau. “We had talked about it. This was going to be his return home. We were going to do this with our family and friends.”

Boileau will start this year’s 5K race, which is being dedicated to Jonathan, who died in a Minneapolis hospital on April 4 from a runaway infection.

She will be accompanied by a team of more than 50 people who will be raising money for DEBRA Canada, the charity that supports people who suffer from epidermolysis bullosa (EB), the blistering skin disease that made every day of Jonathan’s life difficult.

“Jonathan wanted to keep his wave going, so that’s what we’re trying to do,” said Boileau, who serves as the volunteer president of DEBRA Canada.

Among those joining the DEBRA Canada team is Evan Prescott, an eight-year-old Montreal boy who lives with EB. He uses a wheelchair at school, and often walks on his knees at home because his feet are so sensitive. He uses nitrous oxide — laughing gas — to manage his pain.

Jonathan befriended Evan in 2015 at an EB benefit concert in Ottawa.

“He reminded me of me. He was so full of energy,” Jonathan said at the time.

Evan and other members of the DEBRA Canada team will all be wearing T-shirts emblazoned with Jonathan’s picture. The race is to start at 4 p.m. Saturday at the corner of Laurier Avenue and Elgin Street.

Boileau said the six weeks since Jonathan’s death have been exceedingly difficult.

“I miss hearing his voice, hearing his laugh,” she said. “Things are just unfair — having to spend Mother’s Day without him.”

Jonathan would have turned 18 on June 2.