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 hasa mild form of epidermolysisbullosa(EB).

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

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

He remained positive through countless medical ordeals, and raisedfunds and awareness on behalf ofother children, Riley-Laurin said.

'Someone was out there explaining'

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

Riley-Laurinsaid she metPitrea 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-Laurintold CBCRadio's Ottawa Morning Monday. "I think people come together for those kinds of reasons."

It was through PitrethatRiley-Lauringot acquainted with the wider EB community and DEBRA Canada,a charitythat supports EB patients.

Last yearshe organized a fundraiser for the diseasein honour of Pitre, and she plans toorganize 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."