Family Lives In Self-Imposed Exile In Hopes of Saving Daughter

The O’Neills. Photo by the O’Neill Family/Facebook.

As the country debates the pros and cons of quarantine in relation to Ebola cases, the O’Neill family of Columbia, South Carolina, has been living in self-imposed seclusion for nearly five months. It’s an effort to protect their daughter, Eliza, 4, from germs, as she was diagnosed with a rare, ultimately fatal genetic disorder called Sanfilippo Syndrome Type A in July of 2013.

Eventually, doctors say, Eliza will lose the ability to talk, walk, eat, and breathe. Her parents, Glenn and Cara, are racing to raise $2.5 million via GoFundMe for an upcoming gene-therapy study at Nationwide Children’s Hospital in Columbus, Ohio. The clinical trial is their only chance to find a possible treatment to save Eliza and help the one in 70,000 other children who suffer from this disorder, and so far their efforts have raised over $1.2 million from more than 25,000 people around the world. They’ve also launched the Cure Sanfilippo Foundation.

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But until the trial’s possible start date early next year, the family, which includes Eliza’s 7-year-old brother Beckham, has decided to self-quarantine, so as not to expose Eliza to potential viruses. They made the decision after Eliza kept getting sick at school.

“Initially, we thought we’d homeschool Eliza and Beckham for the last few weeks of school,” Glenn tells YahooParenting. “And then she started feeling better and sleeping better, so we decided it would be best if we all stayed home.” The family is now 150 days into its isolation, posting updates regularly on Facebook, as well as a blog.

Glenn, a consultant at Symantec, works from home, while Cara quit her job as a pediatrician. Their groceries and other supplies are delivered to their door and sanitized before being brought inside. Even Cara’s mom, who lives locally, isn’t allowed inside the house. “She’s here every other day delivering something, but it’s been hard,” Glenn says. “When she pulls up with our groceries, she stands 20 yards away from the kids. They talk at a distance, but it’s of course difficult.” Sometimes, the family will go biking around their backyard trails visit a local deserted beach. 

Eliza and her mom. Photo by the O’Neill Family/Facebook.

News of Eliza’s devastating diagnosis last year prompted Glenn and Cara to dive into research mode. “You hear there’s no treatment, no cure, and you don’t know what to do,” says Glenn, who soon learned of a clinical trial that had stopped the disease in animals. But the team needed funding to proceed with human trials. “We became determined to raise funds to get the clinical trial up and running,” he says. “There’s nothing that can get you more on task, on focus, or motivated than your child’s life on the line.”

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These days, the couple draws support from parents who have lost their children from Sanfilippo. “They don’t want other parents to be parents like us,” Glenn says. “The biggest thing we did right early on is that we knew we needed to ask for help and we needed to open our lives.”

For now, this means they need to stay home and stay healthy in preparation for the clinical trial. But it’s hardly been easy.

“With our decision to not go out, we are in essence, taking experiences away from Eliza,” Cara writes on her blog. “We’re doing all of this in hopes that we will actually be giving her the best chance at a full future, but it is still very hard to reconcile in our minds. Our lives have become completely ‘virtual.’”

This is something that concerns Dr. Sampson Davis, an emergency room physician at Meadowlands Hospital Medical Center in New Jersey. “You can’t help but love this family-first position they’re taking — it’s an act of solidarity. They made a decision and they feel that sense of control they lost coming back to them,” he tells Yahoo Parenting. “At the same time, I’m concerned the most for Beckham, because it’s tough for a 7-year-old to fully grasp what’s happening.” He adds, “There are no birthdays, and milestones are important to social development.”

In fact, it’s birthdays that are hardest for the O’Neills, especially with Eliza’s fifth coming up next month, on November 16 — the date by which they are trying to raise the remaining funds needed. (You can donate here.)

“Birthdays are usually a day when parents celebrate all the things your kid has gained the previous year,” Glenn says. “For us, it’s a painful reminder because, from here on, it’s going to be a trek backwards for Eliza. It’s like taking the candles off the birthday cake when you have this diagnosis.”

But despite everything, he remains optimistic. “We’re in a race right now,” Glenn explains. “Eliza is in the state of this disease where it gets bad really quickly, and we are racing to fund this clinical trial so money won’t be a limiting factor. We want Eliza and other children with this disorder to have a chance at life.”