For the second time in as many years, a Chestermere family is organizing a best-ball golf tournament fundraiser to support research into their son’s rare health condition. Organizer Brooke Gibson said her son Daniel, now seven years old, was diagnosed with Prader-Willi Syndrome (PWS) hours after his birth. “Because it’s a very rare syndrome, not a whole lot of funding goes into it through government,” she said. “It’s all done through parents organizing fundraisers and people personally stepping up to the plate.” According to Gibson, PWS affects approximately one in every 15,000 live births and is what she called an “equal opportunity disorder,” affecting people regardless of sex or ethnicity. “Essentially, what happens is, when the baby is conceived, on the fifteenth chromosome, there’s either information missing…or the baby got two chromosomes from mom and not one from dad,” she said. Daniel is affected by the latter form of PWS. When he was born, Gibson said, he was deemed to have failure to thrive – he had difficulty feeding, had low muscle tone and was always sleepy. As he’s grown, she said, Daniel has experienced developmental delays with speech and cognition. “Typically, infants with PWS do not hit their milestones on time,” Gibson said. “They will eventually get their milestones, but not at the same rate that a typical baby would.” Gibson said, eventually, Daniel and others affected by PWS will experience a failure of the hypothalamus – the part of the brain that controls hunger, among other things. “At some point in [Daniel’s] life, or any individual’s with PWS, they reach a point where they no longer register as full,” she said. While Gibson said they have not reached that point with Daniel yet, there will come a time when all food will need to be kept under lock and key, and Daniel will require constant supervision to regulate his food intake. A huge side effect of PWS is obesity, she added. Despite the challenges that accompany PWS, Gibson said it has become the family’s everyday reality – and she said they are committed to providing their son the best possible life. For Gibson and her husband, Scott, part of that means doing their share to raise awareness. Gibson currently sits on the board of directors for the Foundation for Prader-Willi Research Canada and is the president of the Prader-Willi Association of Alberta. They are also active fund-raisers for PWS research, she said – specifically, into treatments for individuals living with the syndrome. “Because it’s in his DNA, it’s part of his genetic makeup, there’s never going to be a cure for PWS,” Gibson said. Funds from this year’s golf tournament will again go to PWS research. After a successful first tournament last year in Strathmore – which raised $21,000 before overhead costs – Gibson hopes, this year, to raise at least $30,000. The tournament will take place Sept. 8 at the Lakeside Greens Golf Club in the Gibsons’ hometown of Chestermere. Registration will open the day of the event at 12:30 p.m., with a shotgun start at 1:30 p.m. According to Gibson, the tournament is filling up fast, with 113 of 144 spots already taken. A buffet dinner will be held following the tournament, along with a silent auction, raffle prizes and a 50/50 draw. Cost for the event is $125 per golfer, or $30 for anyone just attending dinner. Anyone wanting to register for the tournament or learn more can contact Gibson at [email protected], or visit fpwr.ca
