Hope and a celebration of the Christmas spirit in music and song from performers like Erica Brighthill rang out Thursday night, at the Embrun Community Centre, during the Holiday Benefit Concert in Memory of Butterfly Child Ambassador Jonathan Pitre. The event celebrated the courage of a Russell child who campaigned until the day he died, to raise public awareness and research funding for treatment of a genetic disorder, which makes its victims’ skin painfully sensitive to the slightest touch.
Hope and a celebration of the Christmas spirit in music and song from performers like Erica Brighthill rang out Thursday night, at the Embrun Community Centre, during the Holiday Benefit Concert in Memory of Butterfly Child Ambassador Jonathan Pitre. The event celebrated the courage of a Russell child who campaigned until the day he died, to raise public awareness and research funding for treatment of a genetic disorder, which makes its victims’ skin painfully sensitive to the slightest touch.

Holiday concert celebrates a child’s courage

It was cold outside Thursday night, but inside the Embrun Community Centre, the atmosphere was warm and caring as an audience of several hundred celebrated the courage of one Russell Township child.

Singers and musicians, both local and from the Ottawa-Orléans area, came together to offer their songs and talents for the Holiday Benefit Concert, in memory of Butterfly Child Ambassador Jonathan Pitre. Tara Shannon, a Russell Township resident who has become an award-winning member of Canada’s music community, organized the event in recognition of young Jonathan Pitre, a local child who suffered from epidermolysis bullosa (EB), a rare genetic disorder that left his skin super-sensitive to touch.

Pitre and others like him endure painful bruising and blistering of the skin from even the slightest excessive contact. They are often left wheelchair-bound because they cannot walk without agonizing pain from the pressure put on the soles of their feet.

Young Jonathan Pitre died in April 2018, as a result of complications which arose during a stem cell treatment procedure to deal with his condition. During his short life, he became the public face for other EB sufferers in Canada and around the world, and was the ambassador for DEBRA Canada, a non-profit organization dedicated to raising public awareness about the condition and research funding support for treatment programs, and an eventual cure for the disease.

Concert organizers are still tallying the proceeds from the Thursday night event ticket sales, and other fundraising activities that took place during the evening, but the overall feeling is that the Holiday Concert in memory of Jonathan Pitre was very successful.

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