South Carolina couple Cara and Glenn O'Neill resorted to the power of social media in raising their goal fund of $2.5 million for the clinical trial of their daughter, Eliza. The online fundraising campaign through the viral YouTube video called "Saving Eliza" has already reached over $1 million to help little Eliza who suffers from a rare disease.
Eliza, 4, was diagnosed in 2013 with the Sanfilippo syndrome that will make Eliza's body and mind deteriorate eventually resulting to the inability to speak or walk. According to the Today Health report, the illness will start to takes its toll on the child at age 5 or 6 often leading to irreversible brain damage and then death when the teenage years has been reached.
There is no cure for Eliza's disease but her parents found hop at the Nationwide Children's Hospital in Columbus, Ohio. The hospital's researchers discovered a gene therapy that was able to cure the syndrome in mice.
However, $2.5 million is needed to launch the facility's clinical trial that for Eliza. The O'Neill family can now get the medication that Eliza will use in the trial with the money that they have raised online. Even though the FDA (Food and Drug Administration) approval is still pending, the clinical trial is expected to begin by the end of 2014 or early 2015.
In the Daily News report, Glenn O'Neill shared that he is amazed with the number of total strangers that helped his family even with just small donations placed. The viral video helped the O'Neill family in raising money for Eliza as filmmakers DL Cade and Benjamin Von Wong helped, worked on and produced the films after Eliza's father connected with them.
The video for the "Saving Eliza" campaign showed the viewers the background story of the O'Neill family. Currently, Eliza is still doing well but the disease will certainly happen soon so her parents are really determined to reach their goal fund and not delay the treatment for their daughter's disease.
Glenn shared that they see the disease affecting Eliza every day so they are working hard in giving their daughter as well as other children with the Sanfilippo syndrome the chance to see if the clinical trial can work.
"When your child's life is on the line, you think it's going to be the money that would hold it up. Now the focus is not the money. We still need FDA approval, but I feel like we can get there and money won't hold us up," Glenn O'Neill stated.
Glenn further added that the contributions give the family more hope. "This is happening because of the generosity of people, $10, $50 at a time," Glenn shared. The O'Neill family collects the contributions at the GoFundMe.com site where one hundred percent of the contributions go directly to clinical trial fund.
Credit: YouTube/The VonWong
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