(WBIR - Oliver Springs) Dozens of East Tennessee residents and several guests from across the country participated in a Butterfly Walk on Saturday to raise awareness for Cockayne syndrome, an extremely rare medical condition.
The childhood disorder leads to premature aging, sun sensitivity, and other problems, according to Haylee Carroll, who organized the event.
Carroll's youngest daughter, Eris, has Cockayne syndrome. She's almost one-year-old, but doctors only expect her to live between 3-7 years.
Carroll works through the Share & Care Cockayne Syndrome Network to help support research to help find a cure for the extremely rare disorder. It's so rare that doctors have diagnosed only about 50 cases in the U.S.
One child from Texas and another from Colorado who also have Cockayne syndrome came to East Tennessee with their families for this weekend's fundraiser. The two children, along with Eris, are set to be in a new study to learn more about the disorder and hopefully find a cure.
