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Parents have turned everywhere continued from p.8 "The interesting part about a lot of rare syndromes and diseases is that there are generally one or two experts on them in the entire world. If you don't happen to find the right institution or potential diagnosis, it's entirely possible that you may never hear about the researcher or the syndrome." Although the Browns have suspended any further genetic testing because of the trauma it caused their daughter, Stephanie is still a patient with SickKids' Genetics and Metabolics department. There is only one step left in an attempt to find an underlying cause for her unusual metabolism, which is called whole exome sequencing. "This is mapping out most of Stephanie's DNA, and ours, to see if they can find any mutations specific to her that might be causing the problem. We have found out there are some pretty serious downstream impacts from participating in the testing." Based on current laws, explained Jason, any information found must be shared with insurance companies. "If they find any pre-disposition to cancer, diabetes, etc., it can be used to deny her coverage or increase the cost of premiums for reasons that have nothing to do with her metabolism. Given that almost any finding will be non-treatable, we have opted to put this relationship on hold until the laws are changed or something changes that makes a genetic issue treatable." Stephanie also continues outpatient treatment with a psychiatrist at SickKids and visits ErinoakKids for speech therapy, physiotherapy and occupational therapy. The family also uses ROCK (Reach Out Centre for Kids) for developmental testing, CCAC for a dietician and Diane Imabeppu of Wee Spirits Grow for private occupational and feeding therapy. "Diane taught us so much about how the infant brain works and has gotten more out of Stephanie than all of our other therapists combined." The Browns also have a number of supports through Stephanie's Oakville school, Emily Carr Public School, "who are absolutely amazing." The family has also reached out to a number of U.S. resources that are generally available only to U.S. citizens and also tend to focus on syndromes that are much more degenerative and largely fatal, said Jason. The Browns have also contacted several authors and doctors who specialize in childhood trauma, but the resounding response was that no one had ever heard of a child so young being so traumatized. 9 | Friday, January 23, 2015 | OAKVILLE BEAVER | www.insideHALTON.com 905.842.6000 s r r TM DENNIS CIACCIA Owner/Operator (1/2 km east of 4th Line) NatioNwide Lifetime GuaraNtees · serviNG the oakviLLe CommuNity siNCe 1990 501 SPEERS RD. UNIT #2 SAFEtY CHECK & BRAKES SPECIAL EMISSIOn tESt PACKAGE PADS or $ SHOES +taxes NO TAX Most cars & light trucks. Labour Extra. All coupons must be presented upon arrival. Cannot be combined with any other offer or specials. Expires February 6, 2015. Most cars. All coupons must be presented upon arrival. 95 $ 00 $ Expires February 6, 2015. If Alignment not preformed inspection charge will apply. Most cars & light trucks. All coupons must be presented upon arrival. Not to be combined with any other offer. Expires February 6, 2015. 79 39 ALIGnMEnt SPECIAL 95 +taxes · Change oil, filter & lube · Up to 5L,10W30, 5W20, 5W30-Synthetic Oil Extra · Load test battery & service terminals if required · Check cooling system, test coolant strength WIntER CHECK-UP, OIL CHAnGE & ROtAtIOn · Inspect front & rear brakes · Check tune-up belts · Check lights · Check steering · Check exhaust · Inspect all levels NEW CAR WARRANTY APPROVED. All coupons must be presented at time of arrival. Coupons cannot be combined with any other offer or special. Expires February 6, 2015. SAFEtY CHECK Ontario Government Inspection $ Most cars & light trucks. All coupons must be presented upon arrival. Expires February 6, 2015. 65 00 $ LUBE, OIL & FILtER OFF 20 39 · Rotate 4 tires & adjust air pressure · Windshield washer fluid top-up MUFFLERS & PIPES 99 % Most Cars +taxes ON parts & labOur most cars Most cars & light trucks. All coupons must be presented upon arrival. Expires February 6, 2015. +taxes 22 99 ROtAtE & BALAnCE 4 tIRES +taxes Includes up to 5L 5w20, 5w30, 10w30 $ 99 +taxes All coupons must be presented at time of arrival. Expires February 6, 2015. Synthetic oil extra. Most cars & light trucks. Most cars & light trucks. All coupons must be presented upon arrival. Expires February 6, 2015. MAG Wheels extra $2.00 each OPEN: Monday - Friday 8:00am - 5:30pm Most Saturdays 8:00am - 1:00pm