4-year-old Eliza O'Neill is not your average little girl. She likes to play with her brother, watch cartoons, sing and dance, and a thousand other things little kids like to do -- but instead of progressing and growing with her peers, she's slowly going to lose her bodily functions.
Eliza has Sanfilippo Syndrome, which is a genetic condition that "makes the body unable to properly break down long chains of sugar molecules called glycosaminoglycans." What that means is that over the course of the next few years, she will lose her talk and walk, and will develop seizures before she eventually dies. She is not expected to make it to her teens.
She has one chance though, and her parents are trying to bank on it. Glenn and Cara O'Neill were understandably heartbroken when Eliza was diagnosed last July, but they quickly went to work trying to find a solution.
They found Nationwide Children's Hospital in Ohio, who could start a gene therapy trial in late 2014 that could cure Eliza and other children with the disorder. The only problem is that it's going to take $2.5 million to get off the ground.
Glenn and Cara started a website, SavingEliza.com, where they ask, "What would you do if you knew that money was the only thing standing between your child and their chance at a full and happy life?"
They've been "desperately fundraising" to make this experimental treatment a reality. They've held races, dance-a-thons, golf tournaments, and silent auctions. They've sold bracelets and started a letter writing campaign. They started the nonprofit Cure Sanfillippo Foundation.
Photographer Banjamin Von Wong recently created this beautiful video to raise awareness for the O'Neill's cause.
The O'Niell's are not giving up hope -- they are doing everything humanly possibly to save their little girl, but time is running out. Eliza is already showing early symptoms, and the brain damage is irreversible. She needs this gene therapy before she reaches "the tipping point when her disease will take an irreversible turn for the worst."
Her parents wrote on her GoFundMe.com page, "She and many others like her are counting on you to donate to the cause or share this story so that they can have a chance to leave their mark in this world … The clock is ticking."
What lengths would you go to in order to save your child's life?
Image via The VonWong/YouTube