Eliza O'Neill just learned to spell her name, a sweet victory her family is savoring because there are so many milestones the little girl might not reach. Their efforts to raise money to save her life have gone viral, but they need a lot of money and they're running out of time.
Eliza, 4, the daughter of Glenn and Cara O'Neill of Columbia, S.C., has Sanfilippo Syndrome Type-A. As a story on WLTX explains, "Children with this disease are missing an enzyme which is essential to breaking down certain sugar molecules. The body and mind begin failing at various stages and speed."
That means Eliza will soon stop progressing. Then she will begin a slow backward decline. Children with the disease are not expected to live to adulthood; speech is usually lost by age 5. But there's a cure, and her family's trying to raise the money to fund a clinical trial in Ohio so that she has a chance. They've held fundraisers and lobbied.
The story has garnered an extraordinary amount of attention because of the family's social media campaign, creation of a video and its pick-up by multiple news organizations.
According to an article on Huffington Post, "The O'Neills are heartbroken, but hopeful. Though, as Cara notes, they need action more than hope. Nationwide Children's Hospital in Ohio could start a gene therapy trial at the end of this year, one that could cure Eliza and other children who participate — but it will cost $2.5 million to get off the ground."
The O'Neills ask this question on on their website, SavingEliza.com. "What would you do if you knew that money was the only thing standing between your child and their chance at a full and happy life?"
"The total amount needed in the next several months is $2.5 million and we are working day-in and day-out with other affected families. We have started our own non-profit 501c3 Cure Sanfilippo Syndrome (Tax ID: 46-4322131) with no paid employees. All donations here are tax-exempt. In several months, $250,000 total has been raised from running fundraising parties, 5K runs, golf tournaments and dance-a-thons ... and we continue to work non-stop....WE WILL NOT GIVE UP, but we can’t do this without more help there just isn’t enough time. Please become a part of this miracle with us," they plead on the website.
They are also hoping that an online video will prompt strangers and friends alike to donate.
The medication would "literally stop the disease in its tracks overnight," the O'Neills told Britain's Daily Mail.
The Mail reports the O'Neills have made some great connections, including filmmakers DL Cade and Benjamin Von Wong, who created the video. And the effort has been helped by Johnny Lee Miller, who plays the part of Sherlock Holmes in "Elementary." He's been campaigning for funding for research into the disease since learning that one of the crew has a child with the disease.
According to the Mail report, "Miller has addressed a congressional caucus in Washington on behalf of rare disease organizations" and created a foundation called Jonah's Just Begun Foundation, which was named after that child. He also plans to run in a fundraising event in May.
Email: firstname.lastname@example.org, Twitter: Loisco
Copyright 2016, Deseret News Publishing Company