Cystinosis, one of the many rare, genetic diseases in the world today…
Like in any good article, the reader should first be provided with a brief history of the article’s subject. Read thusly: According to the Cystinosis Research Network, cystinosis is a rare disease, more often than not diagnosed before the age of two. It causes cystine, an amino acid, to pool in specific organs of the body. Cystine crystals formulate in the kidneys, eyes, liver, brain, white blood cells, and pancreas. Without treatment, children may develop kidney failure before the age of nine.
It goes without saying…a cystinosis diagnosis never sounds good.
Founded in 2013 by the Little family, the Liv-A-Little Foundation aims to find a cure for cystinosis, a disease that hinders their oldest daughter, Olivia Little’s, young life. At six months of age, Olivia began developing an aversion to food. This continued into her ninth month, Olivia much preferring water over eating, when she was rushed to the ER for kidney failure and was diagnosed with cystinosis.
According to news provider, Shoreline Beacon, in an effort in raise awareness for cystinosis, the Little family urges their hometown, Saugeen Shores in Ontario, to “go purple” in visual recognition of the debilitating disease. Since July 2015, residents and local shops of Saugeen Shores have decorated their front facades with purple ribbons and bows as a mass shout-out to end cystinosis for good.
To raise money to fund research, stores are charging small fees for purple merchandise, and donation jars have been set up around town.
Even though the movement ends in August, the Liv-A-Little Foundation has made plans to hold their annual Liv-A-Little Swing, Shoot and Liv Golf Classic on September 12th at Saugeen Shores. Historically, the event has had great success, raising nearly $100,000 for Cystinosis research in 2014.
Read more about the Liv-A-Little Foundation and how they are advocating for patients with cystinosis.
The next time you look at your closet, pick out something purple to raise awareness for little Olivia and cystinosis patients everywhere. Don’t forget to share this article to loop in everyone else that it’s time to paint the town purple.