It’s that time of year again in Saugeen Shores, when the town gets ready to go purple.
Purple is the favourite colour of a certain little girl, Olivia Little, who suffers from the rare condition of Cystinosis.
Olivia was born a healthy 7lbs.14oz and measured 20 ½ inches long who did everything “normal” babies do; she smiled, laughed, rolled over, babbled and played.
However, that soon changed around six months when she found a love for water and hated food. Olivia had zero interest in food and this soon became a daily battle. The doctors kept encouraging her parents to keep trying new foods, to keep the environment calm and to limit her water intake. However, by nine months Olivia’s mom Erin knew something was not right.
Olivia’s day begins at 7:00 a.m., whether she likes it or not. It’s time for her daily dose of vitamins (medication) as Olivia’s parents refer to them as. Olivia receives 44 different vitamins every single day. The vitamins must be given every six hours around the clock, every day.
Today, Olivia is a happy little eight-year-old but, unlike others her age, she still must follow the strict regime of medical care.
This week, the Little family had special visitors as the Hartz family of Pennsylvania paid a visit. Their son, Landon, who is the same age as Olivia also has Cystinosis. Moms, Lauren Hartz and Erin Little, met at a Cystinosis conference and have become fast friends every since. “It’s actually very coincidental,” says Erin Little. “Lauren and I have birthdays one day apart. Our children are the same age and, in fact, when we met at the conference, we were both pregnant with our second babies. We would never have met except through Cystinosis and our passion to find a cure for this rarity and now we are best friends.”
At Olivia’s early age, parents Erin and Chad, set out to establish the Liv-A-Little Foundation to raise funds in support of the treatments, research and, ultimately, a cure for Cystinosis. Given the rarity of the disease, there is no government funding for research and the family struggles and works tirelessly each year to raise funds through various means.
Back to the colour purple. August has become the traditional month for the town to display the colour purple. Purple bows adorn the community everywhere and, with each bow purchased at Keepsakes & Memories in Port Elgin, a portion is donated to Liv-A-Little Foundation. When the project first started, Chris Swain, owner of Keepsakes & Memories was one of the first on board and, each year, the number of bows sold continues to grow. In 2017, with just under 600 bows sold, Swain was able to donate $3,643.50 to the Liv-A-Little Foundation. The three-year total that Keepsakes & Memories has donated is just under $10,000 at $9,989.50. “We’re hoping this year will be over the top,” says Swain. “We are all ready to go with our bows in two sizes small and large or we can do a custom order.”
The bows, this year, will also be available at Martin’s Home Hardware in Southampton beginning August 1st.
The annual ‘Swing, Shoot and Liv’ golf classic is also coming up next month inSeptember at Saugeen Golf Club to raise funds that will help to one day wipe out Cystinosis.