Ottawa woman with EB praises Jonathan Pitre

Jonathan Pitre was a resilient hero who made himself the face of a painful skin disease to raise awareness and make life easier for others, says an Ottawa woman who lives with a mild form of the condition.

"He went above and beyond where he didn't really necessarily need to," said Gemma Riley-Laurin, who has a mild form of epidermolysis bullosa (EB).

"He was determined to make a difference and bring awareness to the disease."

Pitre died Wednesday evening at the age of 17 in Minnesota, where he and his mother Tina Boileau had gone to get him treatment for the disease. It's a rare and painful genetic disorder that made his skin break with the slightest friction.

He remained positive through countless medical ordeals, and raised funds and awareness on behalf of other children, Riley-Laurin said. 

'Someone was out there explaining'

The 40-year-old lives with dominant dystrophic EB, which attacks her knees, ankles, elbows and knuckles. It's a milder form of the disease. Pitre's type affected his whole body.

Riley-Laurin said she met Pitre a handful of times and stayed in touch with his mother.

"I'm blessed because I was able to meet him and Tina and to see how passionately someone can want a cure," Riley-Laurin told CBC Radio's Ottawa Morning Monday. "I think people come together for those kinds of reasons."

It was through Pitre that Riley-Laurin got acquainted with the wider EB community and DEBRA Canada, a charity that supports EB patients. 

Last year she organized a fundraiser for the disease in honour of Pitre, and she plans to organize another one this summer.

"I actually grew up without knowing there are other people with the disease," she said. "[It was important to me] just knowing that someone was out there explaining what he was dealing with."