Eliza O’Neill turns 5 years old on Sunday, and her family wants to give her a $500,000 birthday gift: the chance to live to see many more birthdays.
In July of last year, Eliza was diagnosed with Sanfilippo Syndrome, a rare terminal genetic disease that causes a toxic material to build up in children’s brains and bodies, leading to severe disability. By age 6, most children with the disease have irreversible brain damage and lose the ability to speak, and many don’t live beyond their teens.
In just more than a year, the O’Neills have led a campaign that has raised more than $1.3 million to go toward funding a potentially lifesaving, national gene therapy clinical trial, but they lack about $500,000 to meet their goal.
“This is not for one little girl,” said Eliza’s father, Glenn O’Neill. “This funding’s going to stop a disease for all children for all time.”
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But the fundraising is exhausting and is taking up time and attention O’Neill and his wife, Cara, would rather be giving to their daughter and their 8-year-old son, Beckham. So they’re making one final request for donations to meet their goal by Eliza’s birthday Sunday.
“It’s hard work, meaning you’ve got to keep at it and keep trying to get your story out there. When it’s your daughter’s life and it’s a disease really no one’s heard of, you’ve got your work cut out for you,” O’Neill said. “Right now is a really important time for Eliza, the next five months, to keep her sharp, which means spending a lot of time with her. ... We need to pause and say our family is most important.”
Eliza loves to wrestle her big brother, ride bikes on the trails behind the family’s house and dance in the kitchen, her father said. She’s fun-loving and bubbly, with a contagious laugh.
Like most 5-year-olds, “the way her mind works, it doesn’t work in complex thinking,” O’Neill said of his daughter. “It’s more in a concrete way – ‘I like that song.’ ‘Can we have this?’ She wants this food. ‘Can we do this?’
“She doesn’t know she has Sanfilippo Syndrome. She doesn’t understand that concept, and I’m kind of glad.”
Her disease, though, is painfully real to her family, who can already see it taking an effect on Eliza’s body. For the past six months, the family has self-quarantined themselves at their home to protect Eliza’s health.
“This is going to be a difficult, difficult birthday for our family,” O’Neill said. “We’re going to be smiling and happy, but birthdays are tough. It’s hard not to think about what your child has done in the past year. ... We want her to go forward, not backward, to put more candles on the cake, not take them off. That’s what this disease is like, taking candles off the cake.”
Eliza’s story and the family’s fundraising efforts have gained national and international attention over the past several months. More than 30,000 people and businesses have donated to Eliza’s GoFundMe online fundraising page, which has been shared on social media some 46,000 times. A YouTube video telling her story has been viewed nearly 433,000 times. And the family has been featured by national media such as the Today show, People magazine and Fox News.
It’s been the Columbia-area community, though, that’s stepped up consistently to bring attention to Eliza’s story and donations to her fund, through numerous local events and projects in her honor in recent months.
“You would do anything for friends and family,” said Sherry McIntyre, who has become close to the O’Neills after meeting them last summer and hearing about their story through a mutual friend. In the past year, she and her children have made and sold bracelets to raise money, and she has worked with others to put on events and spread the word of Eliza’s story.
“It’s truly been a blessing to see how many people have supported the O’Neills, and I know they feel the same way,” McIntyre said. “People are coming out of the woodwork to help, and I think that’s just such a beautiful, amazing thing.”
Time is running short for the “Saving Eliza” fundraiser and for Eliza herself. Within the next year-and-a-half or so, the O’Neills will likely know what Eliza’s future holds – whether the gene therapy treatment will be available, whether Eliza will receive it, whether it will halt her disease.
Sometimes her father lets himself daydream about years ahead and what Eliza’s life might be like, he said. But right now, he said, he and his family are focused on their short-term goal of making the treatment possible for Eliza and other children like her.
“Really, really, our hope is life for her and to get to the day where she can get treatment, and then we’ll talk again about what our hopes are after that,” O’Neill said.
“It’s overwhelming, but we keep the hope,” he said. “And we’re getting there. And we’re looking forward to hopefully having this birthday be the birthday that we remember for a long time, the one that had a major impact not only on my daughter’s life, but on other children’s lives.”