Glenn O’Neill checked the number 453 on a large sheet of paper that is hanging in his Columbus, South Carolina, home.
Tuesday marked the 453rd day he and his family have been living in quarantine. The family chose to quarantine themselves so that they can help save the life of Glenn’s daughter, Eliza O’Neill.
"We are just trying to save her life," Glenn, 42, told People Magazine. "The piece of paper reminds us how far we have come and how much further we need to get it."
Five-year-old Eliza was diagnosed in July 2013 with Sanfilippo syndrome, type A. The type A variation is the most severe form of the rare gene disorder.
The illness has caused Eliza to lose her ability to speak. And doctor’s believe that by her next birthday, she may not be able to talk, eat, or walk by herself. Most children with the disease are bound to a wheelchair and need constant care by the age of 10.
"We have to try very hard not to think about what will happen," said her mother, Cara O’Neill. "We have hope she might end up being okay.”
Sweet Eliza’s only chance at survival is at the mercy of a clinical drug test. Over the past two years, the O’Neill family has raised $2.5 million needed to initiate the drug production.
Using a GoFundMe page, as well as conventional fundraising methods, they met their goal last December.
But what was even more difficult than raising money was making the choice to live in isolation. To prevent Eliza from getting sicker, they have quarantined themselves. Even something as simple as the common cold could accelerate her symptoms.
Additionally, it is crucial that she doesn’t develop antibodies to a particular, common virus that could prevent her from the medical study.
"Her body would then reject the gene therapy," Glenn explained. "So when the trial happens, she wouldn't be able to take part in it. We are not going to risk that."
In the rare event that visitors are permitted to visit Eliza, Cara, Glenn, and their 8-year-old son Beckham, they must wear a mask and gloves.
Inside their home, they are creative and playful. Though Eliza has already begun forgetting words and is unable to form sentences, she asks her parents to show her pictures of different animals on the internet.
"She understands what Google is," Glenn stated. "It's a fun exercise to keep her practicing different words." On Monday, the family played in the backyard and acted out a script that Beckham wrote.
"We do a lot of things that regular families do," said Glenn. "We just have so much more time at home."
Beckham has been a supportive older brother and understand that his family is undertaking extreme measure to save his sister’s life. Still, he can’t wait to visit Lego Land and to walk down the aisle of a grocery store.
As they await the drug trial, the family only occasionally steps outside. And the ventures beyond their house are isolated. They don’t interact with anyone else.
"Last week we went to this state park and had a picnic on this bridge that Eliza calls 'troll bridges' because that's what they call it on Dora the Explorer," Glenn told the magazine.
"For just a moment we forgot that our daughter is slipping away," he said. "We will never give up and we will definitely take advantage of every second we have with her."
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