Inspiring Art Shares Unique Perspective On Cystinosis

I’m sure you’ve heard that old saying; a picture is worth a thousand words? It’s kind of a cliché. It’s also kind of wrong.

Some pictures are worth far, far, FAR less than a thousand words (say, any picture featuring a Kardashian). Others, though, say much, much more. Take this picture, for example:

It’s a sweet little picture on the surface, capturing a quiet moment between two generations. Just below the surface, there’s a LOT more going on. What makes it extraordinary is that when Brian Stout, now 34, was his nephew’s age, there was a good chance he might not have made it to adulthood.

Stout is one of roughly 500 people in the United States—and 2,000 worldwide—living with cystinosis.

This genetic disease causes amino acids called cystine to collect in the body, and in many cases can lead to early kidney failure. Stout was fortunate to be diagnosed early, when he was only one. He started kidney dialysis at nine and had a kidney transplant at 11.

Not everyone is so lucky—particularly patients living outside the U.S.—and early detection and ongoing management is key.

That’s why the non-profit Cystinosis Research Network (CRN) created the sponsored the “Dream, Achieve, Inspire” art exhibit.

The CRN launched the exhibit this past summer during their biennial “family conference”; the exhibit brought together 100+ artists—all living with cystinosis—from 30 countries.

Since then, the exhibit has been traveling the world to bring much-needed awareness to cystinosis.

Plans are afoot to bring the exhibit to Mexico, Brazil, and Europe in 2016. That’s a big, global ambition, but it uses small-scale and very personal works of art to connect to the people most in need of information and inspiration.

As Stout said,

“I’d like to see us get some more recognition, especially for a lot of kids that are really struggling, like in Africa and places where there’s not enough medical help…These people are fighting for their lives. They need help.”

So when you take another look at that photo, think about all the challenges and hard work it took to arrive at that simple moment in time—and then think about how beautiful simple moments really are.

Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

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