The O'Neill family is working to raise the final $700,000 needed to fund a clinical trial that could be the answer to saving their daughter's life.
Columbia, SC (WLTX)- Eliza O'Neill's parents have turned to social media to drum up support to help save the life of their 4-year-old daughter.
Eliza was diagnosed with Sanfilippo syndrome, a rare terminal genetic disease, when she was 3 years old. Their latest push is a #sing2lines challenge. Related: 'Sing 2 Lines' Campaign Raises Money for Eliza
The O'Neill's have raised more than $1 million dollars in under one year. They are still looking to raise $700,000.
"Any delay in the FDA steps is huge for us," said Cara O'Neill.
A delay in the clinical trial could mean life or death for Eliza. Without treatment many kids suffering from San Filippo begin to regress dramatically around age 5. Cara says a large portion of the money has already been used to fund the medication being used in the trial. She says they are focused on getting the rest of the money to get the clinical trial underway by January of 2015.
"It won't get better than this. Before we used to say she is progressing, now we will say she is holding her own. We don't see her regressing, yet," said Glenn O'Neill.
If you would like to donate:
Their 501c3 is called: Cure Sanfilippo Foundation - Eliza's Story
Checks can be made out to: Cure Sanfilippo Foundation, and sent to: Cure Sanfilippo Foundation, PO Box 6901, Columbia, SC 29260
You can also learn more about her story by visiting WWW.SAVINGELIZA.COM