Why this little girl's parents want her video to go viral.

There are people who want the fleeting fame that a hugely successful internet video brings, and then there are people like Glenn and Cara, who are on  a mission to save their daughter.

Glenn and Cara O’Neill always wanted to have a girl. After two miscarriages they finally struck gold with Eliza.

For a while, life was perfect.

Then, three years into their perfect life, these parents received devastating news. Eliza was diagnosed with Sanfilippo Syndrome. Her mother, a health care worker, knew immediately what this diagnosis meant.

"This is really bad," was mum Cara's first thought.

Dad Glenn wasn't there when Eliza received the devastating diagnosis.

"I didn't even go to the meeting when the diagnosis was received. I wasn't even at that. It was just another 'check it off the list to make sure that this isn't what it is'. I didn't know what the meeting was," Glenn says.

"You know where it's headed. It's headed towards pain, towards suffering, it's headed towards pain for her and as a father you want to be able to protect your children," Glenn says.

There is a cure but it's not widely available yet.

Eliza's parents are desperate for help so their daughter can access treatment before it's too late. They want to raise funds a clinical trial that her parents hope will lead to a chance at life for Eliza.

"If the money doesn't come in time she'll stop speaking within the next six months time, she will stop walking within the next two years," her mum explains. "She'll stop being able to feed herself in the next three to four years. She will develop seizures and movement disorders, experience a lot of pain and suffering. And then she'll die."

"Hope is a nice word but we need action," Cara says.

"I mean it is so close. We are just so close to this being done and putting children, we're going to be hit or miss," Glenn adds.

The Nationwide Children's Hospital in Columbus, Ohio will conduct the clinical trial that will hopefully save Eliza and the many children around the world, including in Australia who suffer form this syndrome.

To make a donation click here and find out more about Australian children with Sanfilippo Syndrome click here.

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