East Texas child fights rare disease, needs your help

MINEOLA, TX (KLTV) - By Courtney Lane - bio | email
Posted by Ellen Krafve - bio | email | Twitter

MINEOLA, TX (KLTV) - Your votes are needed. An East Texas family is asking for your help in finding a cure for a rare neurological disease affecting their three-year-old son. It's called CDKL5. Your support is needed to help researchers understand the new phenomenon.

Weighing eight pounds, 10 ounces at birth, Gunner Walters appeared to be a healthy, happy baby. But, as time progressed, his parents knew something was wrong.

After a lot of testing, baby Gunner was diagnosed in 2008 with CDLK5, a rare genetic disorder caused by a mutation on the CDKL5 gene.

"It can't produce the protein so his brain doesn't function normally, you know, like ours do," said Judy Walters, Gunner's mother. "He has seizures. He's...delayed. He has visual problems."

His mother says Gunner suffers from multiple seizures a day sometimes every hour. But still, he remains a happy boy. "He doesn't hardly ever cry unless he has a seizure," she said. "He cries. That's about it."

Fewer than 200 cases of CDKL5 are reported world-wide. One of Gunner's doctors from Cook Children's Healthcare Systems in Fort Worth says it usually affects girls.

"Boys before they're born typically don't survive so then to find a boy with it is extremely rare," said Dr. Alice Basinger.

"It changes your life," said Walters. "You realize what your priorities are and you put everything in perspective."

Doctors still are not sure what causes CDKL5 or how to treat it.

"There's not enough documentation long term so we don't know what the long term effects are going to be or how he's going to be in 10 years, 20 years," said Walters.

But, there is something you can do. Walters is urging you to go online to the Pepsi Refresh Project and vote. If the CDKL5 group finishes in the top 10, they will win $50,000 towards research.

"The more that we can bring awareness about the disease and the more we can get help with research the closer we'll be to finding a cure for him," said Walters.

If you would like to vote or learn more about CDKL5, click here.

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