Cara and Glenn O'Neill of Columbia, South Carolina, are desperate to find treatment for their four-year-old daughter Eliza, who has Sanfilippo Syndrome-A, an incurable neurological condition that most often leads to irreversible brain damage and death by the teenage years. Gene therapy is a hopeful fix to this genetic problem, but so far the treatment has only been tried on mice. So the O'Neills are raising money to fund a clinical trial that may help Eliza and other children like her.
With the clock ticking, the family made a video introducing Eliza and telling her story: The "Saving Eliza" video went viral (hashtag #SavingEliza). Last week their fundraising total reached $1 million. And after their story was featured on The Today Show, there was another surge in donations bringing in an additional $53,000.
For Eliza, time is crucial. Her disease will begin taking its toll by age 5 or 6, when kids regress and lose their ability to walk or speak, and often suffer from seizures. The syndrome occurs in those who are missing a metabolic enzyme that's needed to break down sugar molecules in the body.
The O'Neills have a goal of raising $1.8 million dollars to help fund a clinical trial at Nationwide Children's Hospital in Columbus, Ohio. Researchers there are reported to have had past success in testing a cure on mice, but lack the funds needed for a clinical drug trial on children.
The family raised $250,000 in their own community, and an additional $788,000 through online fundraising and their viral video. That's the power of social media at work. Most of the donations have been small — just $10 to $20 — but the impact is immeasurable. Over 21,000 people have been inspired to donate whatever they could, and that generosity has helped to shatter online fundraising records, and more importantly, bring hope to this determined family.
Watch the video: