A family is racing the clock to save their daughter’s life, attempting to raise a huge sum of money before the 4-year-old stops walking, talking, and ultimately dies an early death from Sanfilippo syndrome.
Eliza O’Neill was diagnosed with the deadly disease last year. Her body is missing an essential enzyme that prevents toxins from building up. Sanfilippo can cause seizures and leave kids unable to walk and talk or even feed themselves. Most kids are diagnosed when they’re about 3 or 4, and by age 6 they’ve experienced permanent brain damage. Average life expectancy is in the teens.
After learning that a hospital in Ohio may be on the verge of a cure for the disease, Glenn and Cara O’Neill started a page on GoFundMe to raise money to fund a clinical trial that could lead to a cure. The unbelievable response of strangers has shocked the couple. As Yahoo! Shine reports, Eliza’s page has broken the site’s record for the most money ever donated. The attention is a result of the above video professional videographers offered to make for the family that went viral. The video links to the ‘Saving Eliza’ page and exploded donations from $40,000 to the nearly $946k now raised.
“That video went viral, and it went viral because it tells a very personal story. It was hard for us to watch it back. These videographers who came to stay at our house for eight days did it for free. We knew none of them before it happened,” O’Neill tells Yahoo Shine. “There’s no way I could write our story or even talk about it in a way that explains it as well as that three-minute video. What we live every day is in that video.”
By the looks of things, the O’Neills will have no problem hitting their $1 million goal by the year anniversary of launching the page in October. That will mean they can fund the first phase of the clinical trial. Nationwide Children’s Hospital in Ohio successfully tested a cure for the disease on mice but needed $2.5 million to fund the clinical trial that would test the drug on children. So, not only will the O’Neill’s efforts help their daughter but the estimated 1 in 70,000 kids around the world who have the disease.
Other than the death of a child, there has to be nothing more soul-crushing than bearing witness to your sick child. My kid cries with an earache and I writhe in agony, so I can’t fathom the heartbreak of struggling through your child’s diagnosis with a deadly disease. But from the heartbreak beauty is born. The response to the O’Neills is a testament to the kindness of strangers and how, as a community, we can make anything happen if we band together toward a common goal.
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