A Montreal photographer has made a viral video for a couple strangers in South Carolina to help them raise money for their 4-year-old daughter who’s suffering from a degenerative brain disease.
Eliza O'Neill has Sanfilippo Syndrome, within the next 6 months she won't be able to speak, in a year and a half she'll have irreversible brain damage and in a few years she’ll be dead.
“It’s a feeling in the pit of your stomach, knowing this is really bad, really bad,” Cara, Eliza’s mother, said in the video.
There’s a cure in the form of a Gene Therapy trial but it costs $2.5 million.
“I had no idea that in a deadly childhood disease like this, where there’s a treatment, that it’s left to the parents to fund and try to figure out,” Glenn, Eliza’s father said.
Needing to raise the money fast they thought of a viral video to tell Eliza's story.
“In a desperate state, thinking it was never going to happen, I googled; how to make a viral video?”
That search led them to a viral video expert, who connected them to Montreal photographer Benjamin Von Wong, who offered to make a free video.
“The minute I heard about the story and realised that I could make a difference was the moment I realised that I had to do something,” Von Wong said.
He flew himself down, slept on their couch and created the video. In just two weeks it has raised $250 000 and has close to 100 000 views.
“People are seeing this and saying I can put myself in that position as a parent and as a person and I’m going to help,” Glenn said.
“I’m still apprehensive, it needs to continue. It might look like a huge success but this a binary project, either we save Eliza or we don’t,” Von Wong said.
Eliza O’Neill needs a total of $2.5 million for her treatment, $1 million of that is needed by June. You can donate here.