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Victoria boy, 11, learns to live with epilepsy (Video)

Keldy  Ortiz

By Keldy Ortiz
Nov. 29, 2012 at 5:29 a.m.
Updated Nov. 30, 2012 at 5:30 a.m.

Caleb Hughes, 11, plays with his younger sister, Emily, 7, as his older sister, Erin, 12, holding the baby of the family, Shelby, 10 months, yells for them to stop. Caleb has epilepsy, but he often thinks that his biggest struggle is being the only boy in a house with his three sisters and mother.

Inside Caleb Hughes' room are his favorite toys - two boats that he made of Legos. He also has used shotgun shells from when he hunted with his dad.

Like some 11-year-old kids his age, Caleb enjoys Legos, video games and watching a good movie. But behind the life of Caleb lies a battle that he and others like him have to deal with every day.

He has epilepsy, a brain disorder in which a person has multiple, unprovoked seizures. It's a disorder that happens among children and elderly. Caleb is also autistic. By most accounts, epilepsy is controllable, but not many people understand epilepsy.

November is National Epilepsy Awareness Month, when people can learn about what the Centers for Disease Control and Prevention consider the fourth most common neurological disorder in the United States.

In the U.S., more than 2 million people are affected by epilepsy. During the month, organizations such as the Epilepsy Foundation attempt to tear down the walls of stigma that are affiliated with the disorder.

Caleb's mother, Wendy Hughes, did not know her child had epilepsy until he was 5 years old.

"The first (seizure) happened in school," Wendy said. "I was just shocked when I got that phone call. I took him to the hospital, and that's when we found out he had epilepsy."

Symptoms of epilepsy are different among individuals. Epilepsy is diagnosed when a person has two or more unprovoked seizures.

When Caleb's sister, Erin, 12, first learned about his disorder, she was worried for his safety.

"It looked scary," she said. "He doesn't know what's happening."

In Texas, more than 400,000 people are affected by epilepsy, according to Kimberly Martin, program director of the Epilepsy Foundation of Central and South Texas. Of those, 130,000 people in Central and South Texas areas have epilepsy, she said.

Martin said that while people are diagnosed with epilepsy, others who don't have epilepsy draw their own conclusions about the disorder.

"There's such a stigma. People say you can't drive," Martin said. "Some cultures believe epilepsy is from the devil."

At the Epilepsy Foundation, the goal is to help provide support to children and adults who deal with epilepsy. Thoughts about what epilepsy is are reasons why Caleb does not enjoy what he has to deal with.

When asked about dealing with epilepsy, Caleb doesn't talk about it. He does not remember the seizures he had.

"It makes my head hurt," Caleb said.

Hughes said Caleb doesn't really talk about his disorder. He is more focused on video games and living with four girls at home.

Elizabeth Ortiz, program manager at the Epilepsy Foundation, thinks education about epilepsy is needed in schools so students are unafraid of those with epilepsy.

"Some people don't know their own classmates have it," Ortiz said. "I want (children) to understand the child is not having pain."

In her role, Ortiz said she wants children to be able to not only help kids but also adults.

Because of education, Erin feels better about understanding what Caleb goes through. While Hughes is glad that Erin and her daughters understand Caleb's disorder, she hopes others will, too.

Hughes also wants Caleb to be comfortable and focus on just being a kid.

"By making them aware ... it just lets people know that 'Hey, (people with epilepsy) can take medicine and can be fine,'" Hughes said. "(Caleb's) at that age where he wants to be socially acceptable. I think he is."



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