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“Hope is a Nice Word… But we Need Action”-Cara O’Neill [VIDEO]

YouTube/TheVongWong

Parents of a bubbly, energetic four-year-old girl have used technology to try and save their daughters life.

Cara and Glenn O’Neill felt like “we were in the Twilight Zone” after hearing their four-year-old daughter, Eliza, was diagnosed with the rare Sanfilippo syndrome… which destroys brain cells and eventually claiming the young victims life, usually before they are out of their teenage years.

Good news is, there is a cure… bad news is, it’s very expensive. The researchers are ready to start testing the therapy in kids, but they need to raise $2.5 million in order to put together a clinical trial, that’s the first issues, secondly because Sanfilippo is rare, no drug companies were signing on to fund it.

That didn’t stop the O’Neill family from trying. The family has raised more than three-hundred-eighty-thousand-dollars. With a great portion of that coming from the video made below. Benjamin Von Wong, a Canadian filmmaker, along with his team spent eight days documenting the family’s story and making it into the short video below.

 

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