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OkillLiving LIVING EDITOR: ANGELA BLACKBURN Phone: 905-337-5560 Fax: 905-337-5571 e-mail: ablackburn@oakvillebeaver.com Community helps Brooklyn get back on her feetBy Angela BlackburnIn that time, Brooklyns condition deteriorated. She became confined to a wheel-OAKVILLE BEAVER STAFFchair and then the hospital bed.She missed more than a year of high school and will not graduate with rooklyn Mills is just 17 years old. At age 16, the Oakvilleher twin brother Brendan this June.Trafalgar High School Grade 12 student awoke one morn-She is however, back at school, on her feet and has regained a lot Bing with excruciating lower back pain.of her life.In a few short months, she was taking potent pain medi-This morning was bad. I had to get her on her feet and do cation, was confined to a wheelchair and then her parents, her makeup for her. We were late, but we got her to school, Rebecca and Kris Mills, moved a hospital bed into theirsaid Rebecca.living room because their daughter, a former cheer-Rebecca and her husband, 16-year Oakville residents, leader, couldnt walk or move without severe pain.are behind Brooklyn as they continue to work through After many months, hospitalizations, specialistsbureaucracy in the healthcare system.and tests, Brooklyn was diagnosed with Ehlers Rebecca admits her family, particularly Brooklyn Danlos Syndrome (EDS), a rare condition affect-has been through a lot. She also admits frustration ing only one in 5,000.with the difficulty in diagnosis and equally so with The type of EDS that affects Brooklyn is frustrated efforts at getting her daughter into some genetic and results from a shortage of collagentype of treatment other than pain medication and in the bodys joints the glue that holds thedisability.body together, said her mom. Dislocations and The family ran into obstacles such as pain as the body fails to stay connected is the Brooklyns age and therefore eligibility for pain source of Brooklyns pain. It also presents management programs for adults and children with heart and blood pressure-related symp-as well as waiting lists that reached up to one toms.year.Today, Brooklyn rolls her eyes as she gritsThe clock was ticking as Brooklyn was tak-her teeth and tries to ignore her pain, buting medication for pain that her mom says is shes on her feet and is continuing her stud-often given to cancer patients in their final ies at Oakville Trafalgar High School.stages of the disease and her body was atrophy-She and her parents credit an intensiveing from being confined to bed. Another obsta-pain management program that Brooklyncle was deemed to be Brooklyn not being func-attended at the Mayo Clinic in Minnesota.tional enough to enter programs.For nearly a month, Brooklyn put in long We had no option. We had a hospital bed in days with other teens affected by chronic pain,our living room and no help, said Rebecca.learning a holistic approach to pain manage-In early January, the family took Brooklyn to ment in a medical setting and under medicalMinnesotas Mayo Clinic and its Pediatric Pain supervision. Her family was with her, her mom Rehabilitation Program (PRC).Rebecca staying at the nearby Ronald McDonaldThere were a dozen other children age 13 to 18 House.in the program and suffering from a variety of chron-The $50,000 price tag was one her parents paid ic pain conditions. They were on crutches, in wheel-willingly and one for which they so far have not been chairs, said Rebecca.reimbursed through the Ontario health system.A similar adult program has been running for a quar-In fact, theyve been refused twice.ter century at the clinic, according to Rebecca. The chil-Rebecca and Kris Mills turned to the Mayo Clinicdrens program is relatively newer.when they came up empty in seeking assistance forBy the end of the month, the family was heading home to Brooklyn in Ontario and they were faced with that hospitalOakville.bed in their living room and a daughter who was becoming lostIn that short time, they were able to have her up walking, said to them and herself through pain and medication.Rebecca.While they continue to battle with the healthcare system a In fact, in two weeks, when Kris visited to check on his wife and battle that began when diagnosis of Brooklyns condition remained elu-daughter, Rebecca walked down the hall to greet him. It was a surprise, and sive and continued as they were frustrated in accessing treatment and then in a welcome one.accessing funding assistance for treatment friends and Brooklyn was also tapered off all the pain medication MICHELLE SIU / OAKVILLE BEAVERfamily have banded together to host a fundraiser to help shed been taking.the family pay the bill.The program involved phsyiotherapy several times a STANDING ON HER OWN: A fundraiser is set for Sunday, Feb. 27 toA day of family fun will be held on Sunday, Feb. 27 and day, guest speakers, sleep experts, occupational, recre-assist the family of Brooklyn Mills, who has Ehlers Danlos Syndrome (EDS), paywill feature celebrities like Mike Holmes from Holmes on ational and psychological therapy, cognitive behavioural the $50,000 price tag for attending a chronic pain management clinic in the U.S.Homes.therapy, distraction techniques, diet, exercise regimes to In an interview with The Oakville Beaver, Rebecca and strengthen weak points, deep breathing, peer support, Brooklyn outlined a story that began mid-fall of 2009.family instruction and the list goes on.The lower back pain Brooklyn experienced took them from their pediatrician to countless doc-Rebecca said it was all geared toward how to live a normal life despite pain.tors and specialists, hospitalized Brooklyn at Torontos Hospital for Sick Children and in HamiltonBrooklyns mom said pieces of the program are available here, but they are not cohesive and if and then after related symptoms were recognized through a cardiologist, the diagnosis of EDS wasapproached individually could span years of waiting and treatment.made after heading back to the genetics specialists at Sick Kids.See Mother page 25www.insideHALTON.com OAKVILLE BEAVER Friday, February 25, 2011 24