Gov't shutdown means life or death for one Columbia girl - KSLA News 12 Shreveport, Louisiana News Weather & Sports

Gov't shutdown means life or death for one Columbia girl

Posted: Updated:
Eliza O'Neill Eliza O'Neill
Glenn and Cara O'Neill Glenn and Cara O'Neill
  • KSLA News 12 HeadlinesMore>>

  • Lights at Haughton roadside memorial trashed, replaced

    Lights at Haughton roadside memorial trashed, replaced

    Wednesday, July 30 2014 11:14 PM EDT2014-07-31 03:14:41 GMT
    Missing items from a roadside memorial to an ArkLaTex girl who lost her life near the site has her family shocked and outraged.More >>
    Missing items from a roadside memorial to an ArkLaTex girl who lost her life near the site has her family shocked and outraged.More >>
  • South BC developer scraps subdivision plan, oil and gas company buys land

    South BC developer scraps subdivision plan, oil and gas company buys land

    Wednesday, July 30 2014 11:03 PM EDT2014-07-31 03:03:46 GMT
    Plans for a plot of land originally slated for a new subdivision in South Bossier City have been scratched, and while some neighbors are pleased to hear that, they aren't necessarily convinced that the replacement plan will be any better.More >>
    Plans for a plot of land originally slated for a new subdivision in South Bossier City have been scratched, and while some neighbors are pleased to hear that, they aren't necessarily convinced that the replacement plan will be any better.More >>
  • ETX boy has surgery to help him hear

    ETX boy has surgery to help him hear

    Wednesday, July 30 2014 10:44 PM EDT2014-07-31 02:44:52 GMT
    Jackson Foster with his parents after having surgery on his ear.Jackson Foster with his parents after having surgery on his ear.
    Earlier this year we told you about a Bowie County family wanting to have a special birthday for their soon-to-be two-year-old son. You may recall, this child is deaf, and though the family's plan to sing "Happy Birthday" to him this year will not take place, they are one step closer to their goal for birthdays to come.More >>
    Earlier this year we told you about a Bowie County family wanting to have a special birthday for their soon-to-be two-year-old son. You may recall, this child is deaf, and though the family's plan to sing "Happy Birthday" to him this year will not take place, they are one step closer to their goal for birthdays to come.More >>
COLUMBIA, SC (WIS) -

Many Americans are feeling the effects of the partial government shutdown. Few, though, are feeling it quite like one Columbia family.

For the O'Neill family, every day the government remains closed is another day that means life or death for one special little girl.

When 3-year-old Eliza O'Neill enters the room, she steals your heart. Then, she moves on. Like most little girls, she wants to play.

But it was this summer when mom and dad learned that life in the O'Neill household could see fast changes. The news came during a doctor's visit.

"He said, 'You know, I'm not gonna beat around the bush,'" said Eliza's mother Cara O'Neill. "'This is what it is, she's got Sanfilippo Syndrome.'"

Sanfilippo Syndrome is a rare genetic disease. It's a degenerative condition in which the body and mind begin to fail. Eliza could lose the ability to speak, walk, swallow and her organs could fail.

"You basically watch your child lose everything," said Glenn O'Neill. "In front of you."

Glenn and Cara, who is also a pediatrician, are trying to wrap their minds around the fact that Eliza could die in her teens. There is no cure, but there is hope. A clinical trial in Ohio, where testing on mice has cured Sanfilippo Syndrome.

Human testing could begin in late 2014, but the government shutdown has shut down the research that could save Eliza's life.

"None of these stay on time to begin with," said Glenn. "These things are always getting pushed back to begin with. The last thing we need now is a shutdown."

"We don't have in terms of years," said Cara. "We think in terms of months and weeks because it could be that much of a difference between when she speaks and she doesn't speak anymore."

"At night you want to be able to put them in bed and say, 'We're not going to let anything hurt you,' you know?" said Glenn. "No monsters, they don't exist. This monster, it does exist. I can't tell that to Eliza and that is horrible. You know, that's not in my control."

Families across the nation are trying to raise $2.5 million over the next nine months to fund the final phase of the research in order to take it to human testing.

Read more about Eliza's story here. Donate to her cause by clicking here.

Copyright 2013 WIS. All rights reserved.

Powered by WorldNow