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

Eliza O'Neill
Eliza O'Neill
Glenn and Cara O'Neill
Glenn and Cara O'Neill

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.