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3 · Friday, May 28, 2010 OAKVILLE BEAVER · www.oakvillebeaver.com Robbie's Rainbow gives hope to children By Nikki Wesley OAKVILLE BEAVER STAFF This past January Kate Murray and her son Robbie made a shocking discovery at Sick Kids Hospital in Toronto. Robbie has been battling with Crohn's disease since his sixth birthday and was in the hospital getting his routine Remicade (Infliximab) infusion. When Karen Frost, an inflammatory bowel diseases program nurse practitioner. came to tell the Murrays they could leave, she was flustered. When Kate asked Frost what was wrong, Frost confided one of her patients down the hall needed to be treated with Remicade, but his family couldn't afford the $5,500 treatment. "[His parents] were working six or seven jobs to make ends meet," said Kate, "He had to leave that day without an infusion. When I got home I cried it was just so raw. [We decided] we can either be a part of the problem or try to fix it. Even if we don't fix it, trying is better than doing nothing." It touched Kate very personally. She had watched Robbie suffer as he was given several unsuccessful treatments before finally finding relief from the disease with Remicade. "I could relate to her as a mom, seeing the benefits of this drug. The helplessness of knowing my son is not thriving and here is an opportunity to make my son feel better, but it is out of my grasp..." said Kate. Crohn's disease is an inflammatory disease that affects the digestive tract anywhere from the mouth to the anus. It most commonly affects the lower intestine. In Robbie's case, without treatment, the disease causes intense abdominal cramping, vomiting, headaches, exhaustion and diarrhea. Robbie went through several unsuccessful drug therapies before being put on Remicade (Infliximab). Unfortunately, Robbie's Remicade is not covered under the Murrays' drug plan and the family was denied the Exceptional Access Program under Trillium Drug Benefits Program. The way doctors treat for Crohn's is called a step-up therapy and patients work their way up through stronger and stronger medications. However doctors won't prescribe one of the drugs, Imuran, to children, especially boys, because it runs a high risk of developing childhood cancer. NIKKI WESLEY / OAKVILLE BEAVER RAINBOW MAGIC: Robbie Murray, 8, founder of Robbie's Rainbow, and his mom, Kate Murray. "The guidelines for children are lumped in with the guidelines for adults," said Murray. "When you apply for funding, if you miss one of the [medication] steps the answer is No." Having been through the application process and knowing the problem, the Murrays returned home from the hospital that day in January and made a decision to help. After a long brainstorming session they created Robbie's Rainbow to help fund Remicade for children suffering from Crohn's disease who cannot afford the treatment. Since then Robbie's Rainbow has raised funds with candy sales and fundraising parties with silent auctions. It has raised more than $11,000 -- helped two kids and is on its way to assisting a third young patient. After watching Robbie fight Crohn's and fail to simply keep up with his younger siblings, Kate says "Remicade gave me my son back." Now she is fighting to help other kids with Crohn's disease find their energy and get their life back. Upcoming Robbie's Rainbow events include a Boston Pizza Buffet Lunch on Sunday, June 6 from 1-3 p.m. at the restaurant located at Winston Churchill Drive at North Service Road. Cost is $20. Another fundraiser will be held at Midnight Madness in Downtown Oakville on July 17. To view a multimedia story about Robbie, visit www.insidehalton.com and look for Robbie's Rainbow under the Featured section or follow www.insidehalton.com/videozone/813343. LOOKING FORWARD with FASHION 200 Lakeshore Road East, Oakville · 905.842.0232 · www.burrowsclothiers.com