Little Eliza O'Neill's Campaign for Sanfilippo Syndrome Breaks Fundraising Records
byKaitlin StanfordJun 17, 2014
Earlier this month, we told you about a brave little girl by the name of Eliza O'Neill, whose daily struggles with Sanfilippo syndrome have led her parents to tirelessly campaign for funds, in the hopes of finding a treatment. Their moving story, told largely through this now-viral video, has touched the hearts of thousands and inspired over 21,000 to donate what little they could. So great was the outpouring of support, that the total donations so far have shattered online records.
Many of the donations were small — just $10 or $20 — but the impact they will have is immeasurable. Before setting up their GoFundMe page, the O'Neills had worked tirelessly to raise funds for a treatment for 4-year-old Eliza, by holding dance-a-thons, golf tournaments and more. But the real boost to their efforts came after producing two heartwarming videos, including one that features some very moving words from Eliza's 7-year-old brother.
"[Donations are] from extraordinary people donating whatever they can afford," Eliza's father Glenn O'Neill recently told People magazine. "People have reached out saying that they're out of a job but they want to donate $10."
Sanfilippo syndrome is extremely rare, affecting just one in 70,000 children, but its devastating effects are eventually fatal; hence the O'Neills' desperate push for a cure sooner rather than later. Kids like Eliza often suffer from seizures, lose the ability to speak by the time they are five, and ultimately become unable to walk and function normally. The syndrome itself, which is often called MPS III, occurs in those who are missing a metabolic enzyme that's necessary to break down sugar molecules in the body.
The good news is, the O'Neills are well on their way to reaching their goal of $1.8 million, which will help fund a trial for Eliza and several other children at the Nationwide Children's Hospital in Columbus, Ohio. According to Yahoo Shine, researchers at the hospital have had success in the past testing a cure for the disease on mice, but lacked the funds needed for a clinical drug trial on children. With the funds raised by the O'Neills' tireless efforts, though, all that could change very soon.