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
  • HealthMore>>

  • People seek out health info when famous person dies

    People seek out health info when famous person dies

    WEDNESDAY, April 23, 2014 (HealthDay News) -- The deaths of well-known people offer an opportunity to educate the general public about disease detection and prevention, a new study suggests. Researchers surveyed 1,400 American men and women after Apple co-founder Steve Jobs died of pancreatic cancer in 2011 and learned that more than one-third of them sought information about his cause of death or information about cancer in general soon after his death was reported. About 7 percent of th...More >>
    WEDNESDAY, April 23, 2014 (HealthDay News) -- The deaths of well-known people offer an opportunity to educate the general public about disease detection and prevention, a new study suggests. Researchers surveyed 1,400 American men and women after Apple co-founder Steve Jobs died of pancreatic cancer in 2011 and learned that more than one-third of them sought information about his cause of death or information about cancer in general soon after his death was reported. About 7 percent of th...More >>
  • Spouse's sunny outlook may be good for your health

    Spouse's sunny outlook may be good for your health

    Marriage vows often include the promise to stick together for better or for worse, and research now suggests that when it comes to your health, having an optimistic spouse is better.More >>
    Marriage vows often include the promise to stick together for better or for worse, and research now suggests that when it comes to your health, having an optimistic spouse is better.More >>
  • Mental illness not a driving force behind crime

    Mental illness not a driving force behind crime

    TUESDAY, April 22, 2014 (HealthDay News) -- Less than 10 percent of crimes committed by mentally ill people are directly linked to the symptoms of their disorders, a new study shows. "When we hear about crimes committed by people with mental illness, they tend to be big headline-making crimes, so they get stuck in people's heads," said study author Jillian Peterson, a psychology professor at Normandale Community College in Bloomington, Minn. "The vast majority of people with mental illness a...More >>
    TUESDAY, April 22, 2014 (HealthDay News) -- Less than 10 percent of crimes committed by mentally ill people are directly linked to the symptoms of their disorders, a new study shows. "When we hear about crimes committed by people with mental illness, they tend to be big headline-making crimes, so they get stuck in people's heads," said study author Jillian Peterson, a psychology professor at Normandale Community College in Bloomington, Minn. "The vast majority of people with mental illness a...More >>
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.

Copyright 2013 WAFB. All rights reserved.

Powered by WorldNow

208 DeBuys Road
Biloxi, MS 39531
(228) 896-1313

FCC Public File
EEO Report
Closed Captioning

All content © Copyright 2000 - 2014 Worldnow and WLOX. All Rights Reserved.
For more information on this site, please read our Privacy Policy and Terms of Service.