Family talks on girl's struggle with Batten disease - WLOX.com - The News for South Mississippi

Family talks on girl's struggle with Batten disease

Posted: Updated: Sep 19, 2013 11:00 PM
DENHAM SPRINGS, LA (WAFB) -

At age three, Olivia Lewis was running and dancing around her Denham Springs home as active and healthy as any girl her age. 

"Very active. Very active, very talkative. She never met a stranger," said her mother, Morgan Lewis.

At age four, Olivia began having seizures and vision problems. At first, doctors believed she suffered from epilepsy. However, genetic testing revealed that she suffers from Batten Disease, a fatal disorder of the nervous system. Symptoms appear as early as six months old and include vision loss, seizures or subtle changes in motor skills and behavior. 

Over time, symptoms worsen. Children suffer mental impairment, lose motor skills and eventually become bedridden. There is no cure, and life expectancy is only to the late teens or early twenties.

Today, Olivia is seven years old. In the time since her diagnosis, she has lost control of her neck and abdominal muscles. She can no longer eat on her own and she stopped talking. She has to be moved around in a wheelchair and she struggles to sleep at night.

"She would talk your head off," remembered Lewis. "Now, I regret getting aggravated at her. I wish I could hear her voice again. I mean, she mumbles, but that's it. What I would give to hear her say 'mommy' or 'I love you' again."

Lewis has help from her parents and an in home nurse. Olivia's days revolve around feedings, doctors visits and therapy sessions. She still enjoys being outside, however, and she often swings in a special seat or floats in their outside pool. 

"I don't give up hope that she could get her miracle, whether it's here on earth or not. She will be healed," said Lewis.

Only 500 children nationwide are living with Battens. It's her mother's hope that Olivia's story will bring more attention the struggles each of those families face, and to inspire hope that a cure will someday be found. 

"I want others to know what it is and to help us. It's not the popular disease, so no one really wants to do huge things for it and like we always said, until someone famous is affected by this disease, it's lost," said Lewis.

To learn more about Olivia and Batten Disease, you can follow her on Facebook through Prayers for Olivia.

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