A LEGACY OF OPTIMISM
In his moving appreciation of Jonathan Pitre in the April 6 Ottawa Citizen, writer Andrew Duffy described the teen from Russell, Ont., 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 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.
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? 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.
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.
Jonathan developed a special bond with the NHL’s greats. Sidney Crosby was a fan and supporter; the Ottawa 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.
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 Minnesota Wild that night. As Ottawa forward Mark Stone put it, “He takes the little things as huge positives. You can learn from people like that.”
Some have compared Jonathan Pitre to Terry Fox, a Canadian icon whose battle with cancer raised millions in the campaign against another shattering affliction. Both were heroes, both were optimists. Both will be enduring names.
Rest and be without pain, Jonathan. Your legacy lives on.
This editorial originally ran in the Ottawa Citizen and reflects the views of its editorial board.