Reflet_2019_12_19

A R T S HOLIDAY CHRISTMAS CONCERT CELEBRATES A CHILD’S COURAGE

GREGG CHAMBERLAIN gregg.chamberlain@eap.on.ca

“I am still getting messages from people who were blown away by the concert,” said Tara Shannon, event organizer, during a Sun- day phone interview. “The most universal comment is how we all felt Jonny’s presence that night, and how he would have loved it. He loved to sing.” Singers and musicians, both local and from the Ottawa-Orléans area, came together

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.

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. —photo Gregg Chamberlain

Sing House Studios d’Orléans a présenté quelques-uns de ses meilleurs talents au centre communautaire d’Embrun, le 12 décembre, pour le concert bénéfice des Fêtes à la mémoire de l’enfant papillon ambassadeur Jonathan Pitre. L’évènement a permis d’amasser environ 10 000 $ pour la recherche sur le traitement d’une maladie génétique qui rend la peau des victimes très sensible au moindre contact. La maladie a coûté la vie à Jonathan Pitre, un enfant Russell, qui a fait campagne jusqu’à sa mort pour sensibiliser le public à cette maladie génétique. —photo Gregg Chamberlain

to offer their songs and talents for the Decem- ber 12 Holiday Benefit Concert, in Memory of Butterfly Child Ambassador Jonathan Pitre. 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, research funding support for treatment programs, and an eventual cure for the disease. About $10,000 was raised from the Thursday night event ticket sales, and other fundraising activities that took place during the evening. Shannon confirmed that plans are underway already for another memorial concert in December 2020.

COUREZ LA CHANCE DE GAGNER UN PANIER D’ÉPICERIE D’UNE VALEUR APPROXIMATIVE DE $200 avec tout achat de $75 et + d’épiceries entre le 19 et le 24 décembre

Tirage du panier d’épicerie le 24 Décembre

Folk fiddler and composer Jess Wedden offered a toe-tapping set, during the December 12 Holiday Benefit Concert in Memory of Butterfly Child Ambassador Jonathan Pitre, at the Embrun Community Centre. 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 that makes its victims’ skin painfully sensitive to the slightest touch. —photo Gregg Chamberlain

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