JONATHAN’S LEGACY OF OPTIMISM

In his moving appreciation of Jonathan Pitre in today’s Citizen, writer Andrew Duffy describes the teen from Russell this way: “He desperately wanted the most normal of things. Friends. Hockey. Birthday parties. Dog walks. A driver’s licence.

“A day without pain.”

It is this last sentence that stabs at us. Jonathan, who died this week at age 17, spent his life fighting epidermolysis bullosa (EB), a devastating skin disease that causes ongoing blistering, scarring and cavernous sores. It is a cruelly painful condition. He could not crawl as a child without shearing the skin from his knees. Bathing involved an hours-long exercise in agony to carefully remove bandages and dressings, then replace them. He could not participate in the sports he loved to watch.

Instead, Jonathan girded for battle daily against a relentless enemy. A glance at Citizen headlines over the past few years provides a snapshot of what he faced:

• “Jonathan Pitre’s physician warns of hard road ahead.”

• “Teen braces for transplant of stem cells from mother.”

• “Teen hit by side effects of chemo and an infection in his bloodstream.”

• “Pitre considers second attempt after stemcell transplant fails.”

• “Jonathan Pitre marks one year in U.S. hospital.”

This difficult existence ought to have led to numbing despair; who would have blamed Jonathan and his mother, Tina Boileau, had they retreated into passivity and given up? But that was never an option to either. Instead, the tough, red-haired teen steadily rose above the ravages of his disease to become a crusader for others afflicted, a public educator, an example of how to face misfortune, an inspiration — even to elite athletes.

Jonathan and Tina willingly shared with the public the most intimate details of his daily struggle, sharing both setbacks and moments of triumph so that other families fighting similar scourges could benefit. Their public crusading raised hundreds of thousands of dollars for DEBRA Canada, the organization that supports families affected by EB. They projected unflagging hope and optimism, never wasting time or effort on the unfairness of it all. In a world where we rail against the slightest inconvenience, Jonathan’s smiling steadfastness reminded us all of our own capacity to act.

Although he never became a hockey player, Jonathan developed a special bond with the NHL’s greats. Sidney Crosby was a fan and supporter; the Senators’ then-general manager, Bryan Murray (who fought his own courageous battle), signed the teen to a contract to serve as a scout for a day.

And the entire Sens team visited Jonathan last year as he underwent treatment in Minneapolis; he attended and called the opening of their game against the Minneapolis Wild that night. As Ottawa forward Mark Stone put it in an interview with the Citizen, “He takes the little things as huge positives. You can learn from people like that.” Added Kyle Turris, then still with the Sens, “Any time you get to see him or spend time with him, that just changes your outlook on everything. He’s such a positive, energetic kid.” No surprise the NHL honoured Jonathan at its annual awards night in 2015.

Some have compared Jonathan Pitre to Terry Fox, a Canadian icon whose battle with cancer raised millions in the campaign against another shattering affliction. And there are similarities: Both were heroes, both were optimists. Both will be enduring names to the people who know their stories.

Rest and be without pain, Jonathan. Your legacy lives on.