Deborah Moore's six-year-old son, Liam has an illness his doctors call polycystic kidney disease with hepatic fibrosis of the liver. Liam, pictured at right, just calls it his “something.” “When Liam started asking about his illness, that’s how we referred to it,” the Toronto mom says. “Everyone has a ‘something,’ and this is yours. For another kid, it might be wearing glasses or using a hearing aid. For you, it’s your liver and kidneys.” The difference is that Liam’s something will mean at least one organ transplant, possibly more. Liam’s first year consumed the energy of Deborah and her husband, Doug, who watched their son endure a battery of treatments. “Then after his first birthday, I remember thinking, Something good has to come out of this situation,” Moore says. Her inspiration was Liam’s own determined spirit. “Even at four or five months old, dealing with needles and all these other things, he was always fighting.” In 2002, with no fundraising experience, Moore decided to drum up money for research into Liam’s rare genetic disorder. “We figured in the first year we might raise $5,000 or so.” With a devoted team of friends and family, she organized a gala event called Liam’s Light: An Evening of Hope. More than 500 people attended, and the evening’s auction netted an incredible $129,000, enough for a two-year research grant to Toronto’s Hospital for Sick Children. Moore’s charity has since shifted its focus to patients at SickKids who have undergone organ transplants. Through walkathons, garage sales and other gala evenings, she has raised more than $400,000 for the hospital, and in May 2006 opened the Liam’s Light Step Down Unit. The three-bed unit is designed for kids who have received a new kidney, liver, heart, lung or bowel, but no longer need intensive care. It’s decorated with original artwork by Michael Martchenko, the illustrator of Robert Munsch’s beloved storybooks. “The kids are really sick, but they recognize the pictures from The Paper Bag Princess and Mortimer, and they just love it.” Liam himself will likely need the services of the unit soon, but for now he’s just trying to live a normal six-year-old’s life. His body is too fragile to play hockey, something he’s always wanted to do. “But you can’t keep him in a bubble,” Moore says, “so last year I bit my lip and he started playing soccer, and he did really well.” That’s the kind of “something” she’s thrilled to brag about. Chosen charity: SickKids Foundation – Liam's Light |
