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www.insideHALTON.com | OAKVILLE BEAVER | Friday, January 23, 2015 | 8 Stephanie has never had a bite of food in her life continued from p.1 You wouldn't notice if you saw pictures of Stephanie on her trike or lying down that she doesn't walk, but scoots across the hardwood floors at home on her bum. If you didn't know the family's story, you would assume that she eats regular meals, but she is bottle-fed and at 23 pounds, weighs half of what an average four year old weighs. She's just begun to talk and sleep through the night. She vomits frequently. Since her birth, Stephanie's life has been an endless series of hospital visits, medical procedures and appointments. "She's never had a bite of food in her entire life, not one, never. There is no picture with a birthday cake, there's none of that, it's never happened, never," said mom Beverley. "We go everywhere, we've seen everybody. We've tried traditional science and all branches of holistic healing. Stephanie is so unique. There's nobody like her and because of that, nobody believes us." A psychiatrist once told Beverley and Jason that Stephanie was `obviously mentally challenged so just put her in a daycare and hope she learns from other friends.' "We said, `Thanks, but no thanks' and we left." They have contacted a myriad of doctors across the U.S. and abroad and paid thousands of dollars in an excruciatingly frustrating and fruitless quest to determine why their little girl isn't thriving. She has undergone a barrage of genetic tests. All were negative. Stephanie Brown Stephanie's parents strongly believe their daughter suffers from post-traumatic stress disorder, which has manifested itself in an oral aversion, due to the multitude of medical interventions and procedures. Medical personnel, however, are loathe to buy into that diagnosis because of her age. "She is completely undiagnosed; they can't figure her out," said Jason. "We know that she remembers things from when she was very little and that's how she's traumatized. So, whereas normal kids would undergo a procedure and they'd be fine an hour later, Stephanie is not, she is traumatized." Stephanie was born at Victoria Hospital in London, Ont., on Oct. 14, 2010 at 35 weeks after an emergency C-section. She weighed 6.7 pounds. "She was super sweet, super happy," said Jason, 40, who works for TD Bank. see It on p.22 Family has seen a lengthy list of specialists -- to no avail by Kathy Yanchus Metroland West Media The Browns have had a very wide range of experiences with the medical system, from "downright harmful to the most amazingly supportive and caring people." The list of people the family has seen and discontinued service with, is Since 1952 Carpet Cleaning Specialists probably as lengthy as the list of medical personnel they interact with today. The former includes not just multiple departments at Victoria Hospital in London where Stephanie was born, but at Credit Valley Hospital in Mississauga, more publicly funded support agencies than they can count and numerous private physiotherapists, psychotherapists, occupational therapists and respite facilities. Patient at SickKids Currently Stephanie sees a pediatrician for such things as immunizations and weighins, but continues to be a pa- tient at SickKids' Failure to Thrive Clinic, the only one of its kind that the family is aware of. "The way these cases are handled in any other hospital is that the hospital brings in experts from every field to try and find a diagnosis," said Jason Brown. On The Spot! Residential & commeRcial Wall to Wall FURnitURe & UPHolsteRY aRea RUGs PeRsian & oRiental 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. Jason Brown Truck Mount In-Plant Service Water damage Restoration Stephanie's father See the transformation of what we can do in relation to others! Comfort Friendly Spa-like l r. M ge aris n A ' aD Caring Compassionate g hiv ani Sag Visit our new dental office, conveniently located on the ground floor of the recently built Palermo Professional Centre (SE corner of Bronte Road and Dundas Street). VOTED BEST CARPET & RUG CLEANERS 15 YEARS IN A ROW! ar D r. S Relaxing "Each expert looks in their own `silo' for a possible cause. If no one finds an answer in their field there really is no next step. Everyone is pretty much finished with you. The FTT Clinic at SickKids is different ­ they take responsibility for the overall diagnosis, advice and relationship and call in experts as required. Essentially, it's a one-stop shop that doesn't stop its service because they cannot find a root cause." Genetic testing began Stephanie's genetic testing began in London and continued at Credit Valley Hospital, where her file was discussed by a panel of geneticists from across Canada. Some of her blood was sent to the U.S. for specialized testing. The Best Doctor's experience was similar in that a panel of experts from numerous high-profile institutions such as Harvard and Johns Hopkins were involved. see Parents on p.9 drop-off discount! 25% We offer full Family Dental Services in our brand new, state-of-the-art office in a calm and relaxing environment. We are a paperless office and use digital x-rays. We welcome kids, teens, adults and seniors. NEW PATIENTS are welcome and we will accommodate your dental emergencies. We will directly bill your insurance company and offer convenient evening and weekend appointments. 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