Singer/songwriter Tara Shannon and Jonathan Pitre, Russell’s "Butterfly Child”, during one of her visits to see him during his treatment for a rare genetic skin disorder, before complications took his life. A benefit concert in his memory, and to help raise funds and public awareness for resarch on his condition takes place December 12 evening, at the Embrun Community Centre.
Singer/songwriter Tara Shannon and Jonathan Pitre, Russell’s "Butterfly Child”, during one of her visits to see him during his treatment for a rare genetic skin disorder, before complications took his life. A benefit concert in his memory, and to help raise funds and public awareness for resarch on his condition takes place December 12 evening, at the Embrun Community Centre.

Benefit concert in memory of Jonathan Pitre

Jonathan Pitre inspired people all over the world with his courage and optimism in the face of a terrible disease. Now Russell’s “Butterfly Child” has inspired a benefit concert in his memory to help others like him.

Russell Township’s own award-winning star on the Canadian music scene, Tara Shannon, is the host of tonight’s Holiday Benefit Concert in Memory of Butterfly Child Ambassador Jonathan Pitre. Shannon spent time with young Jonathan during his hospital stays for treatment of epidermolysis bullosa (EB), a genetic skin disorder.

“I’ve been doing a benefit concert for the past five years now,” stated Shannon in an email news release to media. “This year we thought bringing the event to Jonathan’s hometown would be a nice way to engage the community in his memory. And it’s a wonderful way to showcase the talent in my backyard. Jonny loved to sing, and so I know he will be with us. I am excited about the event and I look forward to seeing many familiar faces out there.”

“Jonathan would be so proud and happy to know that we are all coming together here in his hometown,” stated Tina Boileau, mother of Jonathan Pitre, and president of DEBRA Canada, an organization dedicated to raising funds and public awareness for EB research and treatment. “Jonathan loved the Christmas season, he loved gatherings and was passionate about helping others with EB. He wanted to ensure that the wave of awareness continued, no matter what, and this event is helping to do just that.”

Jonathan Pitre died April 4, 2018, after complications related to stem cell treatment he was undergoing in hope of improving his ability to deal with EB, an aggressive skin-blistering condition that is described as “one of the most painful diseases known to medicine.” EB leaves the skin of the person affected, as fragile and delicate as a butterfly’s wing, subject to painful blistering and bruising at the slightest pressure. He became a local celebrity and also became known across Canada and abroad for his courage in dealing with his condition.

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