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ILC tries to fill the gap in youth chronic pain cases by John Bkila Oakville Beaver Staff 3 | Thursday, August 22, 2013 | OAKVILLE BEAVER | www.insideHALTON.com Diagnosed with Ehlers-Danlos Syndrome (EDS) in 2009, Oakville's Brooklyn Mills became the inspiration behind the ILC (Improve the Life of Children) Foundation -- nearly three years later, the organization has made it its mission to help children across Canada suffering from all chronic pain disorders. The driving force behind ILC is the need to help the little ones and adolescents, and their families, with chronic pain diseases who fall through the cracks when it comes to getting the treatment they so desperately need. In the last two years, Brooklyn, 20, has had 16 surgeries, most of them dealing with her spine, neck and brain. She has a shunt that drains built up spinal fluid and is also on blood thinners after developing a blood clotting disorder as a result of EDS. A rare condition, EDS is difficult to diagnose, treat and care for. It affects only one in every 5,000 people and is marked by the inability of the collagen in the body to hold itself together. "It's been a process," said Rebecca Mills, Brooklyn's mother. "Every single time she's been ill, they can't figure out what's wrong with her in Ontario, so we've ended up having to travel to the U.S. and they've always figured it out, in what needs to be done, and it's always been successful." Rebecca notes part of the reason why this has been the case is because there are centres in the U.S. specializing in EDS that simply don't exist in Canada. Rebecca is the co-founding director of the ILC Foundation, along with executive director and trustee Sandy Smeenk, who says she co-founded the organization with Brooklyn's mom after witnessing the struggles of the Mills family and realizing they weren't alone. Medical bills adding up In the last two years, the Mills have spent $150,000 on Brooklyn's treatment in the U.S. and Rebecca says they still have approximately another $150,000 they need to pay -- the Mills have been twice denied reimbursement for their daughter's treatments by Ontario's health system. "The only thing we've received is $495 for a consultation with a surgeon in the U.S.," said Rebecca. In addition to a lack of local EDS centres, Rebecca attributes the gap in care to the fact that the condition is not very well-known and there isn't much information out there on it. Lack of best-care practices Smeenk echoes that, adding there is a lack of best-care practices in Canada with regards to dealing with chronic pain diseases, like EDS. "In the health-care system, we rely on best-care practices. What we've learned is that these do not exist for the diagnosis, treatment and care of a broad and inclusionary group (children and young adults) of chronic pain diseases and disorders," she said. When she had learned these bestcare practices did not exist, Smeenk immersed herself in learning and understanding why this was the case, and essentially went about doing it herself, through the ILC. Smeenk says she came across the National Institute for Health Research's undiagnosed disease program in the U.S. and adapted the model to develop a new program called the Brooklyn Mills with Autumn, a participant in ILC's peer support network. | submitted photo Difficult to Diagnose Disease (DDD) program. She then presented her findings to the ILC Foundation's medical advisory board chair, Norm Buckley, who is also professor and chair of the Department of Anesthesia at the McMaster Children's Hospital in Hamilton. "The DDD program is pretty much a step one to step 10 on how to create some best-care practices here," said Smeenk. "The plan is to have an adult and child specialist in each of the masee ILC on p.20 Experience our New Weekly Lunch Express Menu. Gluten free Pancakes, Waffles and Lunch Items Available. 146 Lakeshore Rd.W. Oakville, ON L6K 1E4 Starting September 16 Experience Our Weekly Lunch Menu. Available Monday - Friday. AD MUST BE PRESENTED AT TIME OF PURCHASE. NOT VALID IN COMBINATION WITH ANY OTHER COUPON. FREE ENTRÉE MUST BE OF EQUAL OR LESSER VALUE AND IS SUBJECT TO APPLICABLE TAXES 905.338.6333 OFFER EXPIRES: August 30, 2013 . Q.E.W LGAR RD TRAFA KERR ST DO D AL RV R .W. ORE RD FREE BREAKFAST ENTRÉE Buy one Breakfast Entrée at regular price and receive a second Entrée of equal or lesser value free. LAKESH STORE HOURS: Monday to Sunday from 7:00 am to 3:00 pm