Benefit to help 10-year-old in fight against rare disease

WILMINGTON, NC (WWAY) — Three years ago a little girl with the world at her feet was diagnosed with a rare genetic disease with no cure. Now 10-year-old Ellie White hopes to build awareness and help others.

Tonight a benefit dinner at 128 South Front in downtown Wilmington will raise money and spread the word.

White is living life to the fullest. She’s danced on national TV for “America’s Got Talent,” helped start her own foundation and raised thousands of dollars for juvenile diabetes, which she was diagnosed with at three.

At seven, doctors diagnosed Ellie with Wolfram Syndrome, which is a rare genetic disorder with no cure.

“It’s been affecting me a bit, but I don’t take it as a bad thing,” Ellie said.

Ellie and her family came to Wilmington on vacation from Colorado.

“Being in dry Colorado, I don’t get the ability to go to the beach much,” she said.

Ultimately, Wolfram Syndrome affects the brain stem, causing respiratory failure at an early age. The life expectancy of a patient is typically less than 30 years.

“Nobody is doing anything about it,” Ellie’s mom Beth said. “There’s no cure, there’s no treatment, there was no hope really.”

Beth believes that will soon change. As a molecular biologist, she has faith that with donations and research, there is hope to beat the disease.

The Ellie White Foundation for Rare Genetic Disorders has been created to raise awareness.

“We wanted to spread the awareness so more people will hear about it and tell their friends and family,” Ellie said.

“I can see how close we are to getting a cure, and it’s a cure that can save lives,” Beth said.

The benefit starts at 6 p.m. Tickets for $5 are still available for an afterparty from 8:30 to 11 p.m.

Categories: New Hanover

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