RALEIGH, N.C. (WNCN) — A family who quarantined for 726 days is speaking out about how they did it and what others can do to stay busy at home during the coronavirus pandemic.
In 2014, Cara and Glenn O’Neill made the decision to stay home to keep their daughter, Eliza, from getting sick. Eliza suffers from Sanfilippo syndrome, a fatal rapidly degenerative disease that affects the brain and spinal cord of children.
The self-isolation happened to better their chance of getting Eliza into a clinical trial. There is no cure for Sanfilippo syndrome.
“We did that in hopes to preserve her ability to be in the trial whenever it came around. She was one of the first children to be treated with that therapy,” said the O’Neill family.
They had no clue they would be away from friends and family for nearly two years. They celebrated birthdays with friends and family outside of their house singing to them.
“We thought three to six months we would be doing it,” said Glenn. “The clinical trial we may have had a chance of getting in was just delayed and it took longer for that to happen, so we continued to do our isolation to keep Eliza as a potential candidate for it to avoid a virus.”
The O’Neill family is now isolating with the rest of the world because of the coronavirus. Eliza’s parents said during their time at home in 2014, they got creative and spent a lot of time outdoors.
“We did a lot of charades. We did a lot of dance parties, back when we did it it was ‘So You Think You Can Dance,’ so we would judge each other and hold up a number,” said Dr. Cara O’Neill.
Their advice to others during the pandemic is to be patient with each other, including with children who likely are having a tough time understanding the coronavirus pandemic.
“Most importantly, be patient with yourself because no one signed up to wear all of these hats and try and do it all around the house,” said Cara.
The South Carolina family said the first two to four weeks was the hardest for them. After that, they got into a groove and accepted being stuck at home. They said round two of isolation isn’t any easier even though it seems like it would be after 726 days at home.
“You have to step back occasionally, even if that means walking in the yard or taking a walk around the block by yourself, taking a drive, and packing those throughout the day are helpful,” said Glenn.
Eliza can no longer speak, but can still make vocalization sounds. Her parents say she is able to walk, eat with a fork and swallow, and has also been showing promise in using a communication app via her iPad.
The O’Neill’s are determined to find a cure for Sanfilippo syndrome and help other families impacted by the disease. They founded the Cure Sanfilippo Syndrome Foundation to continue research and fundraising efforts.
“We’ve got 85 families around the country that do all kinds of fundraisers, advocacy, and awareness. We’ve raised over $9 million, we’ve helped fund three clinical trials that are up and running treating children,” said Glenn.
Unfortunately, research, clinical trials and events are on hold right now because of the coronavirus. That isn’t good because Sanfilippo syndrome progresses fast in children.
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