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Eliza's Story: Shutdown Halts Life-Saving Treatment for Girl

1:08 PM, Oct 12, 2013   |    comments
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Eliza O'Neill

Columbia, SC (WLTX)- The government shutdown is impacting one Midlands family who is fighting to save their daughter's life.

In July, 3-year-old Eliza O'Neill was diagnosed with Sanfilippo Syndrome-Type A, a rare terminal genetic disease.

"Never did I think it was going to be this type of diagnosis, something terminal with no cure," said Eliza's father Glenn O'Neill. "The word Sanfilippo wasn't even in my vocabulary."

Children with Sanfilippo Syndrome are missing an essential enzyme for normal cellular function. There is no cure for the terminal disease.

Doctors told Cara and Glenn O'Neill were told there is nothing they can do and their best bet is to find a clinical trial.

"No isn't an option," said Cara, Eliza's mom.

There are research teams who are making significant breakthroughs in Sanfilippo Syndrome research, including a gene therapy cure that has been successful in animal testing.

There is a gene therapy clinical trial scheduled for late 2014 at a children's hospital in Columbus, Ohio. But, due to the government shutdown, the research is being put on hold.

"We need the government to get back up and running because engagement with the FDA is slowing the process down," said Cara.

The gene therapy treatment has reversed the disease in mice and many believe it could do the same in children. The trial, however, is lacking funding to remain on schedule.

The O'Neill's have joined other families to try and raise $2.5 million dollars over the next 9 months.

Donations are directed towards essential research the clinical trial.

If you would like to donate to help fund the clinical trial:Click Here or here Click Here.

 

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