Hub Staff

The Liv-A-Little Foundation's 3rd Annual Swing, Shoot & Liv Golf Classic took place at Saugeen Golf Club on Saturday, September 12 in aid of cystinosis research.

The Liv-A-Little Foundation was formed in 2013 by the Little family after their oldest daughter Olivia was diagnosed with cystinosis at only 18 months old. The main goal of the Foundation is to find a cure for cystinosis by educating, promoting, supporting and funding the advancement of treatments.

Cystinosis, which is a rare "orphan" metabolic disease that afflicts only 75 children and young adults in Canada and just 2,000 worldwide; and for which there is currently no cure. The disease slowly damages organs including the kidneys, liver, thyroid gland, eyes, muscles and brain.

Olivia, who is now five years old and was the star of the day, starts her regular day at 7am, for her daily dose of vitamins (medication). She receives 44 different vitamins every day and they must be given to her every six hours around the clock. Olivia must always have access to water and on average drinks roughly two gallons of water per day.

Olivia's father, Chad Little said they had 176 golfers signed up for the day's event, just short of the maximum 215, but he was pleased with the turn-out.

He said the first Swing, Shoot & Liv Golf Classic in 2013 raised $26,000 but in 2014, $100,000 was raised. “Last year was kind of a banner year for us. It was totally unexpected,” he said, praising the community. “We're just absolutely blessed with the support we get for this.”

Speaking about the 'Paint the Town Purple' promotion, which ran July 26 through August 8, where businesses and individuals were asked to decorate their store fronts and homes in purple, Little said it “took off” this year, the promotion's second year. “We wanted to lead in to the golf tournament and get that awareness and stay true to our mission and raising awareness is one of those things,” he said. “It was really supposed to be an awareness campaign and I think we had 15 businesses downtown on our first year, just in Port Elgin, that had their windows decorated, which was great, and then this year it just exploded.”

Little added, “Some of those days when you're fundraising and working full time and trying to raise two kids and doing all those things, sometimes it gets you down a little bit and you see stuff like that and it totally boosts us up like crazy. It's unbelievable.”

Olivia's Mom, Erin Little thanked everyone for coming out. “Chad and I can't thank you guys enough for all the love and support and for being here today with us,” she said.

The golf tournament got off to an official start at 1pm with Olivia Little taking a ceremonial first drive, with a little help from her Dad. An evening meal and silent auction, which included a large number of items from NHL tickets and autographed shirts to a snowshoe adventure, followed the day's golfing. Over $95,000 was raised.