10-year-old girl embraces life with Wolfram Syndrome - wistv.com - Columbia, South Carolina

10-year-old girl embraces life before losing vision, hearing

Ellie White was diagnosed with Wolfram Syndrome when she was 7 years old. Ellie White was diagnosed with Wolfram Syndrome when she was 7 years old.
Beth White, mother of Ellie White, is helping raise awareness for her daughter's rare disease. Beth White, mother of Ellie White, is helping raise awareness for her daughter's rare disease.
Ellie White learned how to surf at Wrightsville Beach. Ellie White learned how to surf at Wrightsville Beach.

By: T.J. Parker

WILMINGTON, NC (WECT) – Many of us rely on our words and eyesight to get us through the day, and even if someone is blind or deaf, there's still sign language and Braille. But for one girl, those luxuries won't be an option soon.

Ellie White, 10, is the focus of a local documentary and fundraiser to help her with a rare and incurable condition that will steal her vision and hearing over the next few months.

In the mean time, Ellie, who lives in Colorado, is focusing on just being a kid. WECT caught up with Ellie while she was surfing in Wrightsville Beach.

"I'm excited that I'm still able to do this, and I want to do this while I still can," she said.

Ellie was diagnosed with a genetic disorder called Wolfram Syndrome when she was 7 years old. Her mother, Beth White, is helping raise awareness for the rare disease, which with no current cure is terminal. For the mother, it's heartbreaking.

"It's the hardest thing ever to have a kid that has something wrong, you know your own child," she said. "You just want the best for them."

The days are getting harder as the disease progresses.

"I certainly don't have a good attitude all the time 'cause, you know, my child's dying," Beth White said. "She's dying in a horrible way and you certainly have plenty of time to feel sorry for yourself."

While surfing, though, there's no room to feel negative about the situation, even if her first surf lesson may be her last.

"I mean I've had just like countless nights of up-all-night crying, but then I see her in the morning," said Beth White. "We're going to go out with a bang (laughs). We're going to have fun. We're going to experience life."

For a family with so many challenges, the group finds hope in overcoming them.

"My family and all of my friends and teachers are just really with me, able to just keep on pushing with me," Beth White said. "I'm so glad they're with me."

Ellie is only one of 50 children in the world with the disease. The owner of Manna, a local restaurant, recently raised $10,000 for the family to help find a cure for the disease.

"I'm a person who doesn't let life obstacles stop me," said Ellie. "I have it (Wolfram Syndrome), but it doesn't have me."

Copyright 2012 WECT. All rights reserved.

SLIDESHOW: Ellie White learns to surf

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