It’s August and, for Saugeen Shores, that means it’s time to PAINT the TOWN PURPLE in support of Cystinosis research and the Liv-a-Little Foundation.
It is hard to believe that Olivia Little is 11 years old. When we first met, ‘Livvy’ was two and hosted a ‘tea party’. She was such a lively little girl that it was hard to realize she had an ultra-rare genetic disease that still has no cure.
Cystinosis is a rare “orphan” metabolic disease characterized by the abnormal accumulation of the amino acid cystine. As the cystine accumulates in cells, it slowly damages organs including the kidneys, liver, thyroid gland, eyes, muscles and brain. Her life has been one of having to take 95 pills a day but that, nor her disease, define her.
The rare genetic disease afflicts approximately 75 children and young adults in Canada and only 2,000 worldwide and, because it is so rare, there is no government funding for research but that didn’t deter the Little family. Parents Erin and Chad Little decided to tackle the disease head on and began the Liv-a-Little Foundation to raise funds through a variety of means.
They began by creating the purple-bow movement and then hosting the Liv-a-Little fundraising ‘Swing, Shoot and Liv’ golf tournament that would become an annual September event at Saugeen Golf Club, until COVID stepped in. So, for the second year, there will be no golf.
Little did the family know however, that over nine years of fundraising, the community would come together in support of their family and Cystinosis research and raise $905,000. “If it weren’t for the love this community has shown for Olivia, we wouldn’t be thriving as a family,” says Erin Little. “Community is everything.”
With the cancellation of the major FUNdraising golf tournament and other events, Paint the Town Purple through the sale of bows has become even more important and, this year, they can be purchased by donation at the side door of Cathy’s Flowers in Port Elgin.
