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www.oakvillebeaver.com The Oakville Beaver, Wednesday October 4, 2006 - 25 Walk to raise funds for Prader-Willi Syndrome raises $80,000 By Wilma Blokhuis OAKVILLE LIVING EDITOR Little Dante Johnson has Prader-Willi Syndrome (PWS), a rare genetic disorder that causes low muscle tone, cognitive disabilities and an insatiable hunger. At 23 months, the hunger is not yet evident. That usually develops after the second birthday, explained his mother Tanya Johnson. "He already has a few food issues," said Johnson. "During his first year, he didn't suckle well. We've been seeing a dietician since he was four months old to help monitor his calories. It's important maintain a healthy diet for Dante." He is fed 60 per cent of the calories that a normal two-year-old is given. "My husband Keegan and I have re-evaluated how we eat and we've decided, no more junk food," said Johnson. "We decided to set an example for Dante." PWS occurs at a rate of one out of every 12,000 - 15,000 births annually, "occurring spontaneously at conception without explanation," said Johnson, adding there's no genetic testing for it. People with PWS suffer from chronic hunger leading to excessive eating that can lead to lifethreatening obesity. They cannot live independently due to their insatiable appetites, hence they live in group homes with 24-hour supervision. "If they're not watched 24/7, they could eat themselves to death," Johnson explained. There is no medication to control this hunger. "He was born with low muscle tone," Johnson continued. "He didn't cry for several months. He spent the first three weeks of his life in an intensive care unit where genetic tests were run. They were looking for PWS and found it early." Dante was diagnosed in November 2004 when he was three weeks old. "They looked for it because he was floppy and didn't cry." Tanya and Keegan, who also have a sevenmonth-old son Denzel, decided to raise funds for research and improve treatment for PWS. They founded One SMALL Step, using Dante's footprint as part of its logo "because the first step is the hardest," said Johnson, "and our dreams come "Our goal is to one year close down a highway for our walkathon and we're going to do it," said Johnson, who was raised in Oakville and now lives in Mississauga. "We're looking to find a cure with the research funds we're raising, especially the hunger issues," said Johnson. "If we can find something to help with the hunger than we can deal with the other issues, because when a person feels hungry they're edgy and irritable and that leads to other problems," she said. "Kids who feel hungry are really unfocused in school and have cognitive and behavourial issues," said Natasha, a teacher. "We need to educate everybody who is involved with a PWS child," added Linda. The walkathon was well supported locally, said Linda. The Oakville Italian Bakery provided 500 sandwiches and Pioneer Family Pools contributed four prizes for the silent auction. "We're very grateful to the Oakville community and overwhelmed with the support," concluded Linda. Air Canada donated a vacation package to the Dominican Republic and Scotiabank donated $6,000 in cash plus another $1,000 in prizes. Motivational speaker at the walkathon was Farley Flex, a judge on Canadian Idol. For more information about PWS, see www.pwsresearch.org and for One Small Step see www.onesmallstep.ca. ­ Wilma Blokhuis can be reached at blokhuis@haltonsearch.com. BARRIE ERSKINE / OAKVILLE BEAVER WATCH FOR YOUR CHANCE TO THE PULSE: Linda Sotiriou, left, of Oakville holds grandson Denzel Johnson, seven months, while his mother Tanya Johnson of Mississauga holds Dante, 23 months (Denzel's brother) who has PraderWilli Syndrome. At back is Tanya's sister Natasha Sotiriou of Oakville. Tanya, Natasha and Litsa Sotiriou (not shown) of Oakville founded One SMALL Step. true one step at a time. After we received the diagnoses in the hospital and husband and I both said we just have to believe that everything will be OK." The first annual One SMALL Step walkathon last year raised $50,000 from 250 walkers. This year's event "was a huge success" raising $80,000 from 400 participants in August, said Johnson. "Our hope is to find a cure and that Dante can reach his maximum potential and live independently in the future," said Johnson. Her 10-member walkathon committee includes her family, all of them from Oakville ­ mother Linda Sotiriou and sisters Natasha Sotiriou and Litsa Sotiriou, and friends Lisa Violo and Ersilia Sarafini, also of Oakville. $2500 or a presented by T here's No Place Like Home" SPECIAL METROLAND SUPPLEMENT Wina COMING TO YOUR DOOR SEPTEMBER 26-29 2006 Gift Certificate from ToolPackage (Valued at $2500) LAWN&GARDEN LAWN&GARDEN For All of Your Printing Needs · Single Sheet · Tabloids · 1 Colour to Full Colour Process · Very Competitive Prices Look for XS Cargo's flyer in Wednesday's NAME: ADDRESS: FILL OUT THIS BALLOT FOR YOUR CHANCE TO WIN! or you can enter online at contests.metroland.com MAIL ENTRIES TO: THERE'S NO PLACE LIKE HOME, Metroland Corporate Sales, 10 Tempo Ave., Willowdale, Ontario M2H 2N8 Printing and Oakville Beaver Distribution Packages (*Selected areas only) Available Call Marie (905) 845-3824 ext. 273 mgallagher@oakvillebeaver.com POSTAL CODE: EMAIL: TELEPHONE: @ Yes, I wish to receive information from Color Your World and Black & Decker on upcoming specials, contests, promotions & events. 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