Instead, they are just grateful their daughter is still alive.
“She’s running out of time,” says Glenn, 42. “But we haven’t run out of hope.”
Diagnosed in July 2013, at age 3 with Sanfilippo syndrome A – the most severe form of the genetic, debilitating disorder that prevents the body from properly breaking down sugar and causes nerve damage, brain damage, blindness and eventual death – Eliza is racing against the clock for treatment.
By 10 years old, most children with her type of the disease are wheelchair bound or need around-the-clock care.
Yet the O’Neill’s refuse to accept the devastating prognosis as a fait accompli.
For the past three years, the Columbia, South Carolina family has been relentlessly trying to raise money for research, much of it for a clinical trial at Nationwide Children’s Hospital in Columbus, Ohio, where researchers were able to develop a form of gene therapy that they believe could be cure for the syndrome.
They’re now pushing to raise a final $200,000 to reach their $2.5 million goal and on Wednesday, a man in Houston, Texas, offered to match every donation through Eliza’s birthday.
“It’s the only shot Eliza and other kids with Sanfilippo have,” says Glenn. “We were not going to let money get in the way.”
After years of progess, the trial might be starting in a couple months. Even then, the O’Neill’s aren’t sure that Eliza will be picked.
“If the trial saves another child’s life, it was all worth it,” he says.
A Typical Day
For the past 546 days, Cara, Glenn, Eliza, and her 8-year-old brother Beckham, have rarely left their house.
They live in a self-imposed quarantine to prevent Eliza from getting sicker. The common cold could accelerate her symptoms and if she develops antibodies to a common virus she would be receiving in the trial, it could eliminate her from the study.
“It’s been very hard and we are at our breaking point,” says Glenn, who works remotely while Cara had to quit her job to stay at home. “But we are so close to the trial happening that we have to push forward.”
The walls of their home are used as a canvas for Eliza to draw and the backyard has become their playground.
When a tutor comes over to teach Beckham and help Eliza with her speech and therapies, they have to wear a mask and gloves.
“It’s amazing how understanding and strong my son Beckham is,” says Glenn, who marks off each day they been inside on a large white piece of paper hanging in their kitchen. “He loves his little sister and understands, but we owe him big time when we get back out there. He wants to go to LegoLand and Harry Potter world, and you can be sure we’ll be going.”
A Slow Decline
It’s difficult for Cara and Glenn to notice Eliza’s regression on a daily basis, but when they watch home videos they clearly see their daughter diminishing.
“The other day I was putting together this video for her sixth birthday and I can’t even tell you how hard it was to watch,” he says. “It s heartbreaking to see your little girl on camera at four years old doing things she can’t do now. She can’t put full sentences together much anymore and it’s harder for her to pay attention. On the positive side, her therapy has been a huge help in retaining skills, speech and understanding.”
Though the O’Neill’s say they will never stop trying to save Eliza’s life, they are also keenly aware they may ultimately fail, despite their best efforts.
“I’m holding onto every moment I can get with her,” says Glenn. “We know with this disease these moments are fleeting.”
And on her birthday, though their once bubbly and outgoing daughter can no longer able to sing “Happy Birthday” to herself like she’s always loved to do, they will do their best to put their heartbreak aside and help her get through the song.
“She could sing the song a couple years ago,” says Glenn. “It s a really simple thing but it says a lot about how bad it is now.”
“I try and focus on the positive and Eliza has so much more to give,” he says. “We are lucky in that she could be much worse. We still have hope.”