With a disease as rare as cystinosis—as in, only 2,000 people around the world are believed to have it rare—one of the biggest hurdles to raising funds for research has to be relatability.
When you can go your whole life and travel around the world, never once meeting someone with cystinosis, how can you possibly understand it or justify spending money on it when there are other equally pressing diseases affecting so many more people?
The answer, of course, is to put names and faces to these patients; to make their challenges, hopes, and dreams real. And when that name and face is as adorable as Olivia Little, well, that can’t hurt.
Olivia is one of only an estimated 75 children and young adults in Canada with a confirmed diagnosis of cystinosis. Olivia’s parents quickly realized something was wrong with their daughter when she refused to eat food but couldn’t get enough water. It wasn’t until she was rushed to the hospital with kidney failure that the Littles received the diagnosis of cystinosis.
While their day now revolves around Olivia’s strict and extensive treatment regimen, the Littles have not been sitting idly by waiting and wishing for new treatments.
Inspired in part by a local charity golf tournament held in Olivia’s honor, the Littles formed the Liv-A-Little Foundation. Since 2013, the Foundation has sponsored both an Annual Golf Tournament and a range of fundraising events.
The Foundation also has some basic information about cystinosis and links to other resources. And by placing Olivia’s story front and center, they have the perfect “spokesperson” to serve as the face of cystinosis—not to mention a powerful inspiration for the Littles to keep fighting and keep raising awareness.
This year’s Swing, Shoot & Liv Golf Classic is in September; if you’re in Ontario, why not check them out or serve as a volunteer? If you’re not able to be there in person, you can still make your presence felt by donating. Then share your own cystinosis story in the comments below!
