WATCH: “Saving Eliza” Family Vows to Continue Fight Against Sanfilippo
COLUMBIA, S.C. (WOLO) – The O’Neill family of Forest Acres is breathing a sigh of relief after their daughter, Eliza, was treated for her Sanfilippo Syndrome as part of a clinical trial, but their battle against the disease is far from over.
The clinical trial at Nationwide Children’s Hospital was given the go-ahead, in large part, due to the fundraising efforts of the O’Neill family, who raised more than $2 million over the past two years. Their message, captured in a viral video, was shared around the world.
San Francisco videographer Ben Von Wong returned to the Midlands this month to create a second video to help the family continue their mission. While their daughter has been treated, the O’Neill’s say those families they’ve come to know through their experience have become family.
“And the message of the video this time is Eliza was treated, we are thrilled that she’s getting this chance at life, but we need to keep going,” Glenn O’Neill said. “There are so many other children that need to be treated, and treated earlier than Eliza.”
Current funding will only support the treatment of a handful of kids this year.
“There’s this gap of children, that if they can’t get some type of treatment, are not gonna have an option for life, basically,” Glenn said.
A group of families, suffering from the degenerative disease, from West Virginia to Florida gathered at a Rock Hill family’s home recently.
“There are literally families waiting by the phone every day,” Cara said. “They have dreams at night, ‘I got a call! Oh, but I woke up, I didn’t get a call.’ I mean, we know that, we have lived that. It’s something that can change.”
Change, that can only happen with your help. The O’Neill’s want to raise $2 million more. The new viral video will be released early next week. You’ll be able to find it, and donate to the Cure Sanfilippo Foundation, here.