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18 -- PORT PERRY STAR -- Tuesday, July 5 1988 William's children are extremely friendly Madeline Potier, of the white blonde hair and turned up nose, is a fashion connaiseur. Only four years old, she knows what looks good and what doesn't- -and she's not afraid to tell visitors to her parents' Greenbank home. 7 Tete In fact, Maddie isn't afraid to talk to any strangers, which is a constant worry to Louise and Doug Potier. The sweet-tempered tyke has what is coined a "cocktail person- ality"--one of the common symp- Little Madeline Potier loves having her picture tak- en almost as much as she enjoys meeting new peo- ple--her "cocktall personality" is one of the side- affects of her somewhat unique condition, called Wil- llam's Syndrome. Madeline's mom, Louise, Is a Re- gional Director for the syndrome's association, and Is hoping to make more people aware of this unique problem. For details, see story. jamas, 6 dolls, 1 stuffed stockings, 5 blouses, 3 skirts, of shoes, ri dary (Very secre. SS ---- | LL LTT ER INI 14 % | 1 WE MAKE HOUSE CALLS. CALL POR A FREE ESTIMATE. 80 THICKSON ROAD 8. THICKSON PLACE PLAZA WHITBY 430-1636 £7008 OURS: Monday Wendy 10 4b 6 pm. o Thuy & Fy 9 4m 9 pm + Sty 0 4m. © 6 pm » toms of a rare disorder called Wil- liam's Syndrome. Louise says children with the syndrome prefer adult company to that of their peers, and even though they're loners at school, they mingle well with older peo- ple. "They trust and love every- body," she explains. "It's a good side-affect, but it's dangerous." Her fears are that young Maddie will some day be friendly to the wrong person, with the possibili- ty of disastrous results. Although she doesn't have a se- vere case of the syndrome, Maddie is a classic William's Syndrome child. It is characterized by an elfin or pixie face, mental retardation, and a narrowing of the aorta just above the exit from the heart (something called supravalvular aortic stenosis). Other abnormali- ties include a small head (although not noticeably smaller than other children not afflicted), angulation of the big toe away from the mid- line of the body, hemias, depres- sion of the chest, and other con- genital heart problems and/or ab- normalities of the other blood vessels. Faces are characterized by short openings of the eyelids, puffiness around the eyes, a star-shaped pat- tern of the iris, close-set eyes, a depressed nasal bridge, a squint, blue eyes, prominent lips, an up- turned nose and underdeveloped cheek bones. The syndrome is sometimes as- sociated with idiopathic hypercal- cemia of infancy which usually occurs in the first year of life. That is, some patients may have a picture of vitamin D intoxication with a high blood calcium which can lead to calcification of the kid- neys, kidney stones, urinary tract infections, loss of appetite, nau- sea, vomiting, constipation, lis- tlessness and high blood pressure-- not to mention a failure to thrive and grow normally. This occurs in only a small number of patients, but Maddie suffered with most symptoms in her first year. At that time, her parents didn't have any idea what was wrong with their daughter. They talked to doctor after doctor, literally "hospital shopping" before Maddi- oe was diagnosed by a geneticist as having William's Syndrome. The cause of the disease is un- known, but research shows it does appear to be a congenital abnor- mality which may be transmitted as an "autosomal recessive" dis- ease. If 'true, this means that if both parents are "carriers", one of out four children will have the disease and two out of three siblings will PORT PERRY CLINIC HOGAN'S HEARING AID CENTRE of Port Perry DENNIS J. HOGAN 230 Queen Street * NOTE NEW NUMBER * 985-4422 WED. ONLY 1t05PM be "carriers." Both parents and siblings who are "carriers" are entirely normal in both appearance and intelli- gence. There is no means by which the diagnosis can be esta- blished prenatally. The disorder has been reported to occur in twins, in several siblings, and in two individuals who were cousins, but these are most unusual. In the Potier family, only Mad- die is afflicted. Her brother Robert (who, at two, is bigger than Mad- die) and baby sister Emily are both healthy. And on the surface, Maddie is healthy too, although she is more prone to infections and spent most of the winter suffering from colds. But she looks healthy (actually she looks "as cute as a button"), she tall's a blue streak and she's going to school in the fall. Only her regular heart check-ups reveal the seriousness of the syn- drome. . Statistics show the syndrome af- flicts one in 20,000 people--but because the affliction is difficult to diagnose, experts in the field: suspect there are many more. So do Maddies' parents. Louise -and Doug are Ontario Regional Directors for the Canadian Associ- ation For William's Syndrome. The Association evolved from a parent support group organized in Vancouver Bntish Columbia in 1984. It exists to provide support and assistance to families with a Williams child, a network and "family" for adults with William's Syndrome, and to provide profes- sionals with access to groups of William's individuals for possible study. 'The Association's other goals are to locate those William's UA DRAPERIES e ROMAN SHADES eo QUALITY STYLE - yz treme ------------------------ SEAGRA INTERIORS Specializing in: SHEERS VERTICALS e Professionals in: e SERVICE MATERIALS FREE ESTIMATES -NO OBLIGATIONS. 985-8218 Syndrome families unaware of the Association, to become a visible group in the medical, scientific, educational and professional com- munities in order to facilitate re- ferrals of newly diagnosed individ- uals, and to encourage medical and behavioral research aimed at find- ing the cause. Louise has 24 names of Wil- liam's children and adults in Onta- rio, but she says, "We know there's got to be another 100 or so out there." The problem, she says, is many times a William's child can grow to adulthood without ever being diagnosed. "What we're trying to do is get the public aware of it. We need to locate families for starters--I'm sure there's many floating around in the school system, just being called slow learners," she said. "There's one in Oakwood, one in Oshawa--there's one wherever you go, and there should be more." There's not enough information about the syndrome available, and Louise is hoping the more public- ity the Association and the syn- drome get, the more likely infor- mation will become readily available. "The doctors are just as frustrat- ed as we are," she said. As for Maddie, Louise doesn't find her frustrating at all. "We love her the way she is, we've come to accept it. She's easy to live with because she's so loveable. She has to be hugged and kissed all the time and I don't mind that at all." For more information about William's Syndrome or. the Cana- dian Association for William's Syndrome, call Louise or Doug at 985-3968. : JU e BALLOONS MINIS EE ------_.. ,.,ll_lll8n A i i ea at -- GUARANTEED INVESTMENT CERTIFICATES Annual Rates Monthly Rates 10 1/4% 10 1/2% 10 1/2% 2 YEARS 3 YEARS 4 YEARS 5 YEARS 10 112% 2 YEARS 9 3/4% 3 YEARS 4 YEARS 5 YEARS -- MORTGAGE --- Rates subject to change without notice. Call the office for information S BOUGHT & SOLD SCUGOG FINANCIAL SERVICES 250 QUEEN STREET -- PORT PERRY PHONE 985-3832 All Members of Canada Deposit Insurance Corporation a mmr J Sune es EN -- OT I es ere em ----a-- == a me Ae