Father brings efforts to save daughter to Masters

Under Sunday’s hot sun, Glenn O’Neill stood on Berckmans Road holding a simple poster board sign with a big hope. He wasn’t soliciting badges to get inside the gates of Augusta National Golf Club. He wasn’t selling cold bottles of water. He was asking for help to save his daughter’s life.

O’Neill’s white sign had a handwritten request: “Please watch and share www.savingeliza.com.” A photo of his 4-year-old daughter, Eliza, smiled back at tens of thousands of Masters Tournament patrons who walked and drove by O’Neill.

The Web site includes a video detailing Eliza’s diagnosis with Sanfilippo syndrome, a rare and terminal degenerative disease. Her family, from Columbia, is on a quest to spread the video as widely as possible to raise funds for a gene therapy trial at Nationwide Children’s Hospital in Columbus, Ohio. The trial, thought to be a cure for the disease, is scheduled for late 2014 but is not yet funded.

“I’m not going to sit at home and hope something magically funds this,” O’Neill said.

Since Eliza was diagnosed in July, her family and friends have raised $430,000 toward their $2.5 million goal. Knowing time was running out to fund the trial, O’Neill decided to create a video to share Eliza’s story and boost fundraising efforts. Three videographers volunteered to make a 3-minute video that has been viewed more than 88,000 times since it debuted April 2.

“I truly believe that if people watch and share more, it’s gonna happen,” O’Neill said.

Without treatment, many children with the disease lose the ability to speak by age 6. Then, the irreversible brain damage quickly takes away abilities to walk and feed oneself.

O’Neill, wearing a black shirt stenciled with the words “Eliza’s dad,” didn’t ask for donations from Masters patrons, although some slipped him folded $20 bills. Some drivers stuck in traffic on Berckmans Road pulled out their smartphones to watch the video.

“Even if people don’t donate when they go to the site, it’ll help if they share it,” he said.

O’Neill held the same sign Saturday at the University of South Carolina’s spring football game in Columbia. He didn’t leave with piles of money, but he knew he was doing all a father can do to save his child.

“Hope is a good word, but we need action. That’s why I am here,” he said.