Teen shares story of living with rare, terminal illness

Teen shares story of living with rare, terminal illness

WILMINGTON, NC (WECT) - Ellie White has Wolfram syndrome, a terminal illness that begins with Type 1 diabetes and eventually causes vision loss.

According to the National Institutes of Health, the average lifespan for people with the disease is 30-40 years so White, a 16-year-old from Colorado, wants to see and experience as much as possible.

"It can be upsetting at times but I just try to push through," said White, who was on WECT's News Now Wednesday afternoon. "That's why we do these huge, monthlong road trips around the country because I want to be able to see things while I can."

White is in Wilmington for a fundraiser at Manna on Wednesday night at 6. She travels the country raising money to find a cure for Wolfram syndrome and has a foundation to promote awareness of the condition.

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