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Friday, October 8, 1999 THE OAKVILLE BEAVER 13 "Run for the Kids" fights deadly childhood disease By Sandra Omand SPECIAL TO THE BEAVER The annual "Run for the Kids" at Sharkey's Restaurant on Monday is more than just a day of family fun and wonder ful prizes. It is a way to raise funds for the eradi cation of a killer disease called Tay-Sachs that strikes down young children. The event includes a 5 Km race for adults and a 1 Km run for children. Now in its 14th year, the run donates all moneys raised to Tay Sachs and Allied Diseases of Ontario (NTS AD) and was started for a very personal reason - the death of a beloved first child. Event organizer Carol-Ann Szwarz's daughter Jennifer died from Tay Sachs ;when she was only four-years-old after a lengthy battle with the disease. Devastated by the loss of her child Szwarz, who grew up in Oakville, started the run as a way to make some sense out of Jennifer's short life and to help other parents facing the same ordeal that she and her husband did. Tay-Sachs, an inherited neurological disorder, is a disease that hits suddenly. One minute your child is walking around completely normal, then the next they start to lose bits of their vision and become clumsy, gradually losing their skills one by one until they are unable to sit, turn over, reach out or swallow food. "It's like watching a train wreck in slow motion," said Szwarz recalling the look of fear on her daughter's face as she tried to understand why her little body could no longer do the things it could before. What happens in diseases like Tay Sachs and the other allied diseases (such as Niemann-Pick, Drabbe, and all other neurodegenerative diseases) is an abnor mal build up of certain waste products in the cells. The cells become damaged and are unable to function properly. The result is a slow death. People at high risk of carrying the gene that causes Tay Sachs are French Canadians, the Cajun population and Ashkenazi Jews from eastern Europe, although it is not limited to those groups. Both parents must have the gene and, even then, there is only a 25% chance of passing it on. Having a child with the disease does not mean, therefore, that subsequent chil dren will get it. Szwarz has since had two healthy boys now aged 10 and 8, but said some families she knows have not been so lucky. Szwarz, who is President of NTS AD in Canada, a board member of the American branch and has appeared on Oprah to dis cuss the illness, said this has led to some controversial questions revolving around whether to opt for prenatal testing and, if so, whether to terminate a preg nancy if the disease is detecteid. Last year the run raised $7,500 which goes towards a Parent Peer Group and other programs designed to give families caring for children with these diseases invaluable support and education. Of the $7500, $1,249.60 was raised by Andrew Low, who was eight at the time, in memory of his sister who died the year before at four years of age. This year Andrew will be par ticipating again in the IK run and has been knocking on doors trying to get sponsors. So far he has raised $500 for the Parent Peer Group that helped them with his sister Christina whom he contin ues to miss. "I can't get through the first day of school without crying because she died on the first day of school," said the Grade 4 student who groaned about still having to do homework after a night out can vassing his Toronto neighbour hood. Supporting his sister is also the reason Kevin Yates, owner of Sharkey's, donates his restaurant's facilities to the race. Yates is Szwarz's brother and the run is his way of doing something in memo ry of his niece. A pledge form and race entry form can be picked up from Sharkey's or the Running Company on Thomas Street and race day registration will begin at 8:30 a.m. outside Sharkey's. The cost is $ 18 for adults and $5 for the kids IK run (for 12 and under). The 5Km race begins at 10:30 a.m. with the lKm kids run set to go at 11:20 a.m. There will be face painting, a loot bag for every kid that enters the lKm race and door prizes to give away including 30 play stations. 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