Courtesy Glenn O’Neill The O’Neill family in Colombia, S.C., have placed themselves on self-quarantine for the past 160 days to protect sickly little girl Eliza. A South Carolina family has lived the past 160 days under self-quarantine and would know better than anyone the challenges facing Ebola medical workers under mandated quarantines.
But Glenn O'Neill told the Daily News his family's situation was much different than the health care professionals returning home from West Africa, because the O'Neills can decide to leave their house whenever they want.
Instead, they choose to stay away from other people as a precaution to protect the health of Glenn's 4-year-old daughter, Eliza, who has Sanfilippo syndrome.
Children with the extremely rare disease typically start developing deficiencies in muscle growth, speech and brain functions by age 5. Many of the victims are confined to a wheelchair as the disease starts to spread.
Mandated Quarantines
States including New York, New Jersey and Illinois established policies madating that workers who treated Ebola patients in West Africa must put themselves on 21-day quarantines.
People placed under the mandates have resisted the protocols and medical experts have decried the regulations as unnecessary — though politicians say they're in the public's best interest.
Courtesy of Glenn O’Neill 
The VonWong via YouTube 
Courtesy Glenn O’Neill 
Courtesy Glenn O’Neill 
Doctors Without Borders nurse Kaci Hickox was placed in a tent outside a New Jersey hospital with no shower, no TV and only a portable toilet after returning from Sierra Leone on Friday.
She remained under supervision, despite testing negative for the disease, until Monday night, when she was allowed to serve her 21-day quarantine at her home in Maine.
The O'Neills say their situation is less intense than a government-issued quarantine. They do leave their house once every other week, but only to places they are sure there will not be any other people, such as a deserted beach or an open field.
And the only time Glenn O'Neill has gone somewhere with people, he might have gotten arrested.
He needed to go to a bank to sign a form for the family's Saving Eliza Foundation. The 42-year-old was as cautious as he could be, informing the bank members ahead of time he that would walk in, sign the papers and leave without touching anything.
As he pulled into the parking lot, he started to put on his protective mask and gloves — and scared a fellow motorist who spotted him.
People say we're being overprotective, but when it comes to protecting your daughter how can you use that word?
"He pulled back real slowly and had a look on his face like, 'what the heck?'" O'Neill said. "He thought I was going to rob the place. I called the bank and said 'I'm coming in with gloves and a mask. Just making sure there won't be any trouble.'"
Making the Decision
In May the children, Eliza and her brother, Beckham, 7, were pulled out of school and Glenn's wife, Cara, left her job as a pediatrician for special needs children. Glenn now works from home as a purchasing consultant.
"People say we're being overprotective, but when it comes to protecting your daughter, how can you use that word?" he said.
Eliza, who turns 5 next month, is at a crucial stage at which simple colds and illnesses could accelerate her deterioration.
The measure has worked. Eliza has not gotten sick and is doing as well as could reasonably be expected for the time being, Glenn said.
Steven J. Hyman 
Uncredited/AP 
The family is raising money to fund a clinical trial that will hopefully cure the disease. The plan is to continue the quarantine until the procedure is available, possibly by early next year, Glenn said.
Family's Adjustment
The family does not have a TV and spendsa limited amount of time on the computer because Eliza's condition lends to more addictive characteristics. If she is in front of a screen it will affect her speaking ability.
Cara said they appreciated the time they could spend with their kids.
"You don't have that rush of a typical life where you say we have to stop reading right now because we have something to do," she said. "We're OK. We do what we can do. Sometimes we get overwhelmed, but it's just life. We have bad moments and good ones."
The family doesn't get visitors, but they will Skype their relatives and Eliza's speech therapist.
Glenn jokes the house has felt smaller over time.
"My wife says after this we're going to get a bigger house," he said. "I said, 'Sounds good to me.'"
jlandau@nydailynews.com Follow on Twitter @joelzlandau
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