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.
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."
Saturday, July 26 2014 2:09 PM EDT2014-07-26 18:09:07 GMT
A mysterious 'Woman in Black' has been spotted around the Tri-State in recent days, causing social media to erupt with questions about her identity. According to WATE in Tennessee, the Sullivan CountyMore >>
A mysterious 'Woman in Black' has been spotted around the Tri-State in recent days, causing social media to erupt with questions about her identity.More >>
Monday, July 28 2014 7:08 PM EDT2014-07-28 23:08:07 GMT
Two-year-old Alicia Hernandez is currently at Blair E. Batson hospital in Jackson recovering from an ATV accident that killed her mother, brother and a cousin. "My Aunt Lucy Hernandez, her second oldestMore >>
Sarah Eichelberger, of Baton Rouge, was driving her 2009 Acura car when she collided with Lucy Hernandez's Honda ATV. More >>
They were born just two weeks apart. A 10-week-old baby and 8-week-old pit bull have a fascinating relationship. They absolutely adore each other! Louisiana native Brandi Hodges, 25, has posted photosMore >>
A 10-week-old baby and 8-week-old Pitbull have a fascinating relationship. They absolutely adore each other!More >>
Monday, July 28 2014 3:15 PM EDT2014-07-28 19:15:51 GMT
Jackson police are investigating the death of a two-month-old infant. Officer Colendula Green said authorities were called shortly after 10 a.m. Sunday morning to 781 Raymond Road. Green said the babyMore >>
The coroner says the death was caused by an accidental rollover while the baby was sleeping with a parent. More >>
Monday, July 28 2014 8:26 AM EDT2014-07-28 12:26:40 GMT
A two-year-old boy was killed Saturday night after he was hit by a car, according to Highway Patrol.Troopers said it happened at a private residence off of Stagg Road in Pender County around 8:35 p.m.OfficialsMore >>
A woman who is accused of hitting and killing a two-year-old boy in Pender County last week has been arrested on separate charges. More >>
Monday, July 28 2014 6:54 AM EDT2014-07-28 10:54:13 GMT
Michael Adams reunited with his biological family in Biloxi on Saturday after 48 years apart. Their reunion initially began with a phone call back in January.More >>
Michael Adams reunited with his biological family in Biloxi on Saturday after 48 years apart. Their reunion initially began with a phone call back in January. Adams said he called and asked for Ms. Anna McClure.More >>
Friday, July 25 2014 3:19 PM EDT2014-07-25 19:19:10 GMT
(WMC) – A prostitution sting was conducted at a Southaven hotel Thursday. As a result, the following 12 people were arrested: Preston K. Mitchell, 52, Memphis, Tenn., charged with procuring prostitutionMore >>
A prostitution sting was conducted at a Southaven hotel Thursday. Twelve people were arrested.More >>
Sunday, July 27 2014 6:57 PM EDT2014-07-27 22:57:36 GMT
A Scott county man has died of wounds he suffered in an overnight shooting. Coroner Joe Bradford identifies the victim as Bradley Paul Harrison. He was shot twice around midnight on Hazel Road in LakeMore >>
A Scott county man has died of wounds he suffered in an overnight shooting.More >>