A South Carolina family launched a crowdfunding campaign on GoFundMe called Saving Eliza to raise $1.8 million dollars for a little girl and other children who has been suffering from a rare and deadly disease.
The family of Eliza O’Neill describes her as a “fun loving 4-year-old who loves to sing, run and most of all cuddle.” Last July, the adorable little girl was diagnosed a disease known as Sanfilippo Syndrome- Type A, a devastating disease that will change life as she knows it.
Sanfilippo Syndrome, which affects about one in 70,000 children, causes the body to degenerate in only a few years. Eliza and other children with this disease are missing an essential enzyme for normal cellular function. Over time, a toxic material called heparin sulfate builds up in their brain and body leading to severe disability and death. This disease affects both genders, all races, all countries and continents. The life expectancy for Sanfilippo Syndrome patients is early teens.
Within the next year, Eliza will more than likely suffer from brain damage and as the disease continues to tear through her brain and body, she will lose the ability to walk and eventually she won’t be able to feed herself as seizures ravage her body.
Although there is no known cure for Sanfilippo Syndrome, the doctors at Nationwide Children’s Hospital in Columbus, Ohio have developed a new treatment that they have successfully tested on mice. This treatment could save the little girl, along with other children, and stop this disease in its tracks overnight.
However, the researchers of the project need more funding in order to conduct human trials. The family noted, “The research conducted points to this clinical trial being the answer to stopping this disease which means the only thing standing between Eliza and her miracle is month.”
They continued, “The trial is lacking funding to make the medicine, administer the treatment, and remain on schedule, and every moment counts as Eliza approaches the tipping point when her disease will take an irreversible turn for the worst.”
Also explaining the main goal, the family revealed, “Before October 2014, we are reaching out to incredible people, like you, to help us raise $1,8 million through GoFundMe in time to save Eliza. All funds will go to support stopping this terrible disease. ”
“SavingEliza is part of our own non-profit 501c3 Cure Sanfilippo Syndrome with no paid employees, and no funds to personal medical expenses. 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 and raise funds through grassroots efforts non-stop… WE WILL NOT GIVE UP, but we can’t do this without more help: there just isn’t enough time.”
Since its launch, the campaign has raised over $1 million dollars from 22,689 backers.
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