Parents of Girl with Rare Disorder Make Final Push to Save Her Life
When Eliza O’Neill was born, her parents envisioned her 5th birthday to be a joyous occasion, surrounded by family and friends. Most importantly, they hoped she’d be healthy.
Instead, they’re trying to raise the additional money they need to try and save her life.
Eliza suffers from a rare, ultimately fatal genetic disorder called Sanfilippo syndrome, type A.
She was diagnosed in 2013 and has slowly been losing her ability to speak. Doctors say that over time, she will eventually lose her ability to walk, eat and breathe.
Her parents, Glenn, 42, and Cara, 39, have been racing to raise $2.5 million for a clinical trial that is their only chance to find a possible treatment to save her. The clinical trial could also help other kids in Eliza’s position who suffer from the disorder.
Eliza woke up early Sunday morning to her brother Beckham, 8, wishing her a happy birthday.
“We started this morning off with a small gift and have been opening up little things here and there,” Glenn tells PEOPLE. “It’s been a day full of mixed emotions.”
The O’Neills have been documenting the day on their Facebook page.
For almost six months, they haven’t had any friends or family over at their house. They have been living in a self-imposed quarantine so they don’t expose Eliza to potential illnesses in her vulnerable state.
“We had people close to us, including Eliza’s grandmother, on our front yard today, and through the window they sang Eliza happy birthday,” Glenn says. “It was very sweet.”
It was only 12 days ago that they started their new campaign, #1day1goal, to raise the additional $600,000 they need for the trial.
They now have $280,000 to go and hope to raise the rest of it by the end of Sunday.
“If we need to raise more after today, we wont stop until we do it,” Glenn says. “We need to before it’s too late for Eliza.”