Family raises $500K in 15 days to research daughter's deadly disease

COLUMBUS, Ohio - The family of a 4-year-old girl battling a deadly disease used social media to raise more than $500,000 in just 15 days.

Eliza O'Neill has Sanfillippo syndrome type A, a rare genetic disorder that causes a deadly buildup of heparin sulfate in her cells. Soon, Eliza will lose the ability to speak, her parents say. After that, she’ll lose the ability to walk and then she’ll develop seizures.

Most children with Sanfilippo type A don’t live far into their teens, ABC News reported.

The O’Neills hope a pair of researchers can use the money they've raised to find a cure before the end of the year.

The researchers, Doug McCarty and Haiyan Fu of Nationwide Children’s hospital in Columbus, Ohio, have been working on a cure for about 16 years. They’ve found a gene therapy treatment that works in mice, and they hope to try it in humans. But setting up a clinical trial is very expensive. 

When 5K charity runs weren’t raising money fast enough. Glenn O’Neill said he googled “how to make a viral video.” With a bit of help from filmmaker Benjamin Von Wong, the O’Neills launched their video earlier this month. They hope to raise $1 million on their page in addition to the money coming in from local fundraisers.

“It’s been fabulous,” Eliza’s father, Glenn O’Neill, told “It’s going places, I don’t exactly know how. It was in Italy for a while, and Belgium and China. From a parent perspective, until someone comes in and tells us a big company is going to pay for it, a hospital, or the government, we are left to go out and do it ourselves,”

The O’Neills said they know there’s no guarantee Eliza that clinical trials will work, but said they need to try everything they can for their only daughter.

“We don’t want to be two years from now and say as parents that we left anything on the table,” Glenn O’Neill said.

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