August has become the traditional month for the town to display the colour purple. 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.īack to the colour purple. We would never have met except through Cystinosis and our passion to find a cure for this rarity and now we are best friends.” (L) Harper and Olivia Little and special visitors Landon and Jordan Hartz (R)Īt 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. Our children are the same age and, in fact, when we met at the conference, we were both pregnant with our second babies. “Lauren and I have birthdays one day apart. “It’s actually very coincidental,” says Erin Little. Moms, Lauren Hartz and Erin Little, met at a Cystinosis conference and have become fast friends every since. Their son, Landon, who is the same age as Olivia also has Cystinosis. This week, the Little family had special visitors as the Hartz family of Pennsylvania paid a visit.

Today, Olivia is a happy little eight-year-old but, unlike others her age, she still must follow the strict regime of medical care.

The vitamins must be given every six hours around the clock, every day. Olivia receives 44 different vitamins every single day. It’s time for her daily dose of vitamins (medication) as Olivia’s parents refer to them as. Olivia’s day begins at 7:00 a.m., whether she likes it or not. However, by nine months Olivia’s mom Erin knew something was not right. The doctors kept encouraging her parents to keep trying new foods, to keep the environment calm and to limit her water intake. Olivia had zero interest in food and this soon became a daily battle. However, that soon changed around six months when she found a love for water and hated food. 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. ‘Paint the Town Purple’ campaign begins with special guests … (L) Keepsake & Memories and the Little family with visitors the Hartz family (R) Purple is the favourite colour of a certain little girl, Olivia Little, who suffers from the rare condition of Cystinosis. It’s that time of year again in Saugeen Shores, when the town gets ready to go purple.

Sold girl town purple