Cystinosis is a rare Orphan Metabolic Disease. There is no cure.
It afflicts only 75 children and young adults in Canada and just 2000 worldwide. The disease slowly damages organs including the kidneys, liver, thyroid gland, eyes, muscles and brain. Because it affects such a small population, research money is almost non-existent.
The Liv-A-Little Foundation is committed to supporting the advancement of treatments and ultimately a cure for cystinosis by educating, promoting and funding progress.
Olivia Ann Mae Little was born a healthy 7lbs.14oz and measured 20 ½ inches long. Olivia did everything “normal” babies do; she smiled, laughed, rolled over, babbled and played.
However, that soon changed around 6 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. By nine months, Olivia’s mom Erin knew something was not right.
What is Cystinosis?
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