prof i le
Sunshine Club kids meet their hero
GREGG CHAMBERLAIN gregg.chamberlain@eap.on.ca
for the same reason that trying to stand or walk puts too much pressure on the soles of his feet. Every night, the bandages need changing and that requires a good long soak- ing in warmwater mixed with an antibiotic salt-and-bleach solution to make them as soft and pliable as possible so they do not stick to his skin and pull at it before com- ing off. Even then, there is still some pain for young Jonathan, who welcomes sleep at night for the chance to recuperate and prepare himself for the next day. In spite of all that, Jonathan Pitre sits upright in his wheelchair and smiles at the world. He has become both a local celebrity and his situation, and the way he deals with his condition on a day-to-day basis, has made himan international symbol of cour- age and determination to live life without fear and with as much hope and optimism and adventure as possible. “The only true limits we experience in life,” Jonathan said during a recent We Day celebration, “are the ones we create for our- selves. Start dreaming your dream.” What Jonathan Pitre dreams of more than anything else is to journey to Canada’s Arctic Circle region and see the Northern Lights. This year, if possible, but for certain some day he intends to be on the tundra, looking up into the cold Arctic night sky and watch
Jonathan Pitre is a hero to the students in the Sunshine Club at Mother Teresa Catho- lic Elementary School. And to all the other students at the Russell village school. “We admire you because of the great deal of courage you exhibit every day,” saidHan- nah Wanamaker, one of the Sunshine Club members, during a special school assembly June 4. Young Jonathan Pitre has epidermolysis bullosa (EB), a rare genetic disorder that leaves his skin super-sensitive and subject to blistering and scarring at the slightest amount of pressure.The little bumps and jars that might leave a scratch or slight bruise on the arms and legs on other children his age canmean at the very least severe and painful bruising on him that could last for days or weeks. Some of the bruises and scars almost seempermanent now, despite the daily regi- men of antibiotics and pain relievers, up to and including morphine and methadone, that he has to take. Even the effort of doing his own school work at home means that his hands and wrists are always wrapped in bandages be- cause of the pressure of holding a pencil or a pen. His feet and ankles are also wrapped
Jonathan Pitre shares a gentle «fist touch» with a Sunshine Club student at Mother Teresa Catholic Elementary School.
the Spirits of the North weave back and forth in their dancing streams of red, blue, green, and gold. The Sunshine Club wants to help make his dream real. For the past several months, the students have been fundraising through a variety of means and they raised $2,200, which they presented to Jonathan and his family during the June 4 school assembly. “Thank you,” said Jonathan, who also took the opportunity, during a brief question period with the students, to talk about the growing public awareness of EB and his own efforts to help promote funding for research. “More and more people know about the
disease now.” Local musicians Tara Renaud and North Easton performed a song, “Butterfly Child”, written in honour of Jonathan Pitre. The song will become a music video for relase later on the Internet to both help promote awareness of EB and fundraise for research on the condition. Before the assembly ended, Jonathan Pitre had a few final words of advice for ev- eryone in the room, young and old. “Never give up on your dreams,” he said. “Keep going on strong. Never, never ever give up.”
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