The parents of Eliza O'Neill, 4, say they've gone out just a "handful" of times since June

By Caitlin Keating
October 28, 2014 11:10 AM
The O'Neill Family

While Americans debate whether a handful of Ebola cases here should lead to stricter quarantine rules, a family in Columbia, South Carolina, have been living in self-imposed quarantine for nearly five months – all to protect their daughter.

Eliza O’Neill, 4, suffers from a rare, ultimately fatal genetic disorder called Sanfilippo syndrome, type A.

Since she was diagnosed in 2013, the usually energetic and fearless Eliza has been slowly losing her ability to speak. Over time, doctors tell her family, she will lose the ability to walk, eat and ultimately breathe.

Her parents, Glenn, 42, and Cara, 39, are racing to raise $2.5 million they need for a clinical trial that is their only chance to find a possible treatment to save Eliza and help other children who suffer from the disorder.

As tough as that mission has been with their end-of-the-year deadline soon approaching, they have made another tough decision: To self-quarantine their family of four so as not to expose Eliza to potential illnesses in her vulnerable state.

“For Eliza to be a great candidate for the trial we don’t want her to come down with any sickness or virus at all,” Glenn tells PEOPLE. “We have heard stories from families of older kids with Sanfilippo where a sickness at this stage started the downward slide even faster and they never fully recovered.”

The O’Neills believe that the only way to ensure she doesn’t catch anything is for the entire family to avoid contact with the outside world.

“It’s beyond hard, but this is what you do for someone you love,” says Glenn, a consultant at Symantec; the company has allowed him to work from home.

Cara had to quit her job as a pediatrician and the couple now try to homeschool Eliza and her big brother, Beckham, 7. They get their groceries delivered to the front door and clean every door handle, countertop and package with antibacterial wipes.

Life in Isolation

They haven’t had friends or family over for five months. They are now 150 days into their self-imposed isolation and plan to continue it until the clinical trial’s hoped-for start date early next year.

“Sometimes we drive around in the car, and now I consciously avoid the roads that take us by playgrounds, parks and schools with kids playing outside. It’s not just hard for her, it’s also torture for me knowing she wants to be out there,” Cara writes in a blog post about their experience.

If they have to stop for gas, only Cara and Glenn will get out of the car.

“We wear masks and gloves and we don’t go inside any stores,” says Glenn. “I know we look crazy, but we are just trying to save our daughter’s life.”

A ‘Virtual’ Reality

They don’t have the diversion of television because her parents believe Eliza communicates better without it around.

“With our decision to not go out, we are in essence, taking experiences away from her. 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,” Cara writes. “Our lives have become completely ‘virtual.’ ”

Eliza and Beckham won’t see friends on their birthdays that are coming up, they won’t trick-or-treat on Halloween, and there will be no visit to Santa at the mall this Christmas.

As young as he is, Cara and Glenn have explained the restrictions to Beckham – and he seems to understand. “It’s not worth it to go out where people are,” he writes on the blog. “I wouldn’t take the risk.”

At times, Glenn says, the family goes a bit stir crazy being stuck inside. But they never forget why they are doing this.

“The first few weeks were very hard, but it has become the new normal,” Glenn writes. “[One hundred and fifty days] is a long time, but we will go to any lengths. We’ll do this as long as it takes.”

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