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ru A8-The Canadian Champion, Tuesday, October 10, 2006 COMMUITy 9-month-old HoIIy needs your help Trust fund set up for baby missing quarter of hex brain By Stephanie Thiessen CANADIAN CHAMPION STAFF Amonth before their wedding, most young couples arc busy compar- ing tablecloth colours and decid- ing whether to go wîth red wne or white. Not rural Milton residents (.ourtney McLauchlan, 23, and Ken Taylor, 26, who are geuting married in November. Since finding out their nine-montb-old daughter, Holly, bas schizencephaly, a rare developmental birth defect, thc couple's Ife has been about one thing and one thing only: doing ail they can for their precious lit- tde girl. Taylor works 14-hour days as a construc- tion foreman, while McLauchlan's days are filled with a slew of therapist appointments for Holly on top of the nonrial care a new baby requires. Three nights a week, to earu some extra money while on maternity leave, McLauchlan cleans cars at a local detailing shop. The routine that's quickly become the couples new norm leaves hitle time for wed- ding planning, and the constant thinking about Hollys well-being doesn't lcave much room for excitement about their upcoming nuptials. McLauchlan is the first to tell you shes willing to do whatever it takes to give her daughter every chance at a good life. "'ve had 23 years wbere its been ail about me," she said. Now, its aIl about Holly Parents knew something wrong Up until seven mont.hs ago, Holly seemed perfectly normal, McLaucblan said. But then it became clear that something was wrong. "She didnt do anything babies should," McLauchlan explained. The next few months were a nightmare for Taylor and McL auchlan, who tried unsuccessfully to convince Hollys pediatri- cian something was wrong. But McLauchlan acted on her instincts. She got a second opinion, and that pediatri- cian took notice when Holly started choking wbenever she tried to eat sulid food. He also realized Holly wasnt where she should be developmentally After several assessments and meetings GRAHAM PAINEI CANADIAN CHAMPION Nobody really knows what the future holds for Holly Taylor, who was diagnosed last month with a rare birth defect. with therapists, the young parents were told Holly needed an MRI as soon as possible. But Torontos Hospital for Sick Kids told Taylor and McLauchlan that Holly would have to wait several months for an appoint- ment. Deciding to take matters into their own hands, Hollys parents found a private MRI clinic in Calgary that flot only could see them immediately, but also could take an MRI without anestbetic. "Not knowing what was wrong, 1 was concerned the anesthetic would have a bad outcome," McLauchian said. The trio traveled to Calgary last month, a trip that cost $3,000. But finally doctors were able to diagnose Holly Birth defeet extremely rare Schizencephaly is an extremnely rare developmental birth defect characterized by abnormal slits, or clefts, in the cerebral bemispheres of the brain. I don't like to say 'brain damage', because there's nothmng to be damaged. Its under- developed," McLauchian said. Essentially, HolIy's missing about one- quarter of the front hemisphere of her brain, McLauchlan said - something that was apparent looking at the MRI. It was like we were looking at a volley- bail and (part of it) was blacked out with a p)ermanent marker," she said. Now that shes been diagnosed, Hollys getting the care she needs back home. A group of therapists come to the bouse on a rotating hasts to work with Holly, and are "lifesavers", McLauchlan said. But as far as what the future holds, nohody really knows. Doctors have told the couple theres flot much more they could do for l-lolly, McLauchlan said. According to the National Institute of Neurological Disorders and Stroke, people with schizencephaly typically experience developmental delays, delays in speech and language skills and problems with brain- spinal cord communication. They may also have an abnormally small head, partial or complete paralysis or poor muscle tone. Most experience seizures. "SheI l lkely be severely mentally retard- ed," McLauchlan said. Fortunately, Hollys showing some posi- tive signs. Contrary to what doctors first thought. shes flot blind - only very far sighted - and can hear. "Medically, she shouldn't bc able to bear or see," McLauchlan explained. Financial stress taking tol But financial pressures are adding to the couple's stress load. First there was the $3,000 for the trip to Calgary And its become obvious that the parents will soon need to have a home and vehicle that are wheelchair accessible, McLauchlan said. There are also expensive machines and pieces of equipment that can help Holly develop. So family and fniends of Taylor and McLauchlan have set up a trust fund at CIBC - the Help for Holly fund - to help wîth their past and future expenses related to Hollys condition. The CIBC trust fund account number is 00162-010-57-09512. Donations can be made at any branch of the bank in Canada. For more information on Holly and how tohelp, visit http://belpforhollyblogspot.com. Stephanie Thiessen can bc reached at sthicssen@rnmiltoncanadianchampion.com. Cogeco Cable Channel 14 VIJWI~ www.cogeco.ca NORTH HALTON STUDIO Laurier Plaza 500 Laurier Avenue Milton, ON L9T 4R3 905-878-9306