Family Endures Incredible Isolation to Stop Sanfilippo Syndrome in it’s Tracks
August 3, 2015
The number 428 means everything to the O’Neill family.
It’s the number of days that they have been living in self-imposed quarantine – in hopes that it will lower the chances of their daughter Eliza become sicker.
Every morning, they cross off another day on a large piece of paper that hangs in their kitchen.
On Friday, the family spoke to PEOPLE about they will continue living this “unconventional life” because their daughter, along with her big brother, Beckham, 8, mean more than anything to them.
Months of Isolation
Exactly two years ago, Glenn and Cara O’Neill experienced every parent’s worst nightmare: their happy and energetic daughter, Eliza, was diagnosed with a deadly disease.
Eliza suffers from Sanfilippo syndrome–Type A, a rare and ultimately fatal genetic disorder that primarily affects the brain.
The 5-year-old is slowly losing her ability to speak, and by the age of 6, she will most likely not be able to talk at all. By 10, most children with the disease are wheelchair-bound and need round-the-clock care.
But at the O’Neills’ house in Columbia, South Carolina, there is rarely talk about the frightening road ahead. Instead, the family is focused on the here and now – and that includes hope for a cure.
“We have tried the alternative,” Glenn, 42, tells PEOPLE. “At times, we have been negative. We have cried, we have gotten depressed, but that doesn’t help your children or your spouse. We don’t get to crawl into the cave. We make a conscious effort to be positive.”
Contracting and building immunity to one particular virus could lower Eliza’s chances of being approved to be part of a clinical trial that could give her a chance to survive. Through fundraising, in two years the family has raised $2.5 million to help fund the research to stop this disease and hopefully give Eliza that chance.
She could get the virus, which doesn’t show any symptoms, from interacting with friends and going to school.
“Her body would then reject the gene therapy,” Glenn says. “So when the trial happens, she wouldn’t be able to take part in it. We are not going to risk that.”
When Cara, who had to quit her job as a pediatrician to take care of her children, and Glenn were told that researchers at Nationwide Children’s Hospital developed a form of gene therapy that they believe could be a cure for the syndrome, they knew that the steep $2.5 million cost wouldn’t stop them.
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