“I just would like to see something done,” said Councillor Cindy Saucier, during a lengthy discussion at the end of the March 2 regular session of township council.
Councillor Mike Tarnowski raised the issue of what kind of project might be feasible for the municipality, to honour the memory of Jonathan Pitre, also known as “The Butterfly Child” because of a rare disease which afflicted him and left him wheelchair-bound.
Pitre, whose family lived in the Village of Russell, suffered from Epidermolysis bullosa (EB), which left his skin ultra-sensitive to the slightest physical contact, such as scratching or even high heat situations. Painful blistering of the skin resulted and Pitre often lived with his hands swaddled in treated bandages.
People with EB are often described as having skin “as fragile as the butterfly’s wings,” which is how Pitre got his nickname as he became a spokesperson for DEBRA, a non-profit group dedicated to raising public awareness about the disease and research on treating it. Pitre’s courage and optimism in spite of his condition inspired many, even after his death, almost two years ago, due to complications while undergoing a stem cell treatment program for his condition.
During Monday’s session, Tarnowski noted that Ottawa has a street named in memory of Jonathan Pitre and various groups have launched tribute projects. All of council agreed that Russell Township must do something fitting for its Butterfly Child.
Ideas suggested ranged from a “Butterfly Child” park project to naming an ice rink after Jonathan Pitre, when the new sports and recreation complex is built.
“He was so involved in sports, even though he couldn’t play,” said Councillor Jamie Laurin. “He lived and breathed hockey.”
Council agreed that both the family of Jonathan Pitre and the community should be involved in deciding on an appropriate tribute project. Township administration will review all the suggestions proposed for a Jonathan Pitre tribute project and prepare a report for a future council session, which would include cost estimates for a short list of the best ones.
