‘Fearless warrior’

Teen with rare skin condition dies

An Ottawa-area teen with a rare and painful skin condition was remembered Friday as a strong, determined advocate who worked to raise awareness about the disease while displaying a remarkable enthusiasm for life.

Jonathan Pitre, who died this week, pushed for better understanding of epidermolysis bullosa, or EB, his mother said, calling her 17-year-old a “fearless warrior.”

“Jonny’s story has been made very public over the last few years as he invited you into his life and his daily struggles as he tirelessly fought to raise awareness for this horrific disease,” Tina Boileau said in a Facebook post. “I am proud to say you did it Jonny boy!”

Boileau said her family was thankful for the support they have received, but requested privacy.

There is no cure for EB, a rare and debilitating genetic condition characterized by skin fragility that leads to blisters and can cause skin to fall off with the slightest touch. An estimated 3,500 to 5,000 Canadians are born with EB, and are often known as “butterfly children.” Pitre was often affectionately called Ottawa’s “Butterfly Boy.”

“It’s through the community that we refer to them as butterfly children - it’s a nice way to refer to them, it’s a respectful way to refer to them,” said Jay Wilson, chair of DEBRA Canada, an organization that supports families dealing with EB. “It’s because the wings of a butterfly are as fragile as an EB patient or sufferer.”

But Wilson insisted that the fragility only refers to their skin.

“I can’t think of a more courageous subset of our population than folks dealing with EB,” he said in an interview, adding that the pain from the condition is often as bad a suffering from a third-degree burn.

Wilson said Pitre died Wednesday in a hospital in Minnesota, where he had been receiving treatment.

“It was a new stem cell treatment that they were trialing and that’s what took them down there,” he explained. “With that treatment, a patient would undergo pretty aggressive chemotherapy to get the body ready for the stem cell implants.”