A family from South Carolina is hoping a viral video saves their 4-year-old daughter.
The adorable little girl’s name is Eliza O’Neill, and she was diagnosed in July with Sanfilippo Syndrome. The rare condition leads to rapid deterioration of the mind and body.
Her family is hoping to raise $1 million dollars to fund a clinical trial for a cure, but time is running out for the precious little girl.
Here’s what her father Glenn O’Neill said:
“You know where it’s headed. It’s headed towards pain for her and as a father you want to be able to protect your children. The donations that come in will fund this clinical trial and fund a chance at life for Eliza. That is the hope we hold on to.”
The condition has escaped the notice of pharmaceutical companies because of its rareness.
Even though the family has already made about $250,000 – the fact that time is against them has prompted Eliza’s loved ones to create a video that would go viral to speed up their efforts.
Here’s what her father said:
“We have never heard of another child [with her condition] that reaches five-years-old and is still speaking. We have the cure. It’s going to happen at some point. But it won’t happen without money and if it gets delayed, Eliza won’t get it and a lot of other kids won’t get it.”
Because of the viral video, the family has raised nearly $60,000 on GoFundMe, but that is well short of their final goal of $1,000,000.
Sanfilippo Syndrome is extremely rare as evidenced by the fact that only 16 children suffer from it in the U.S.. But it is also quite deadly, as children rarely live past their early teen years.
It’s also quite painful, and that pain starts usually when a child is five-years-old. Eliza is four.
You can understand why the family hopes they can quickly raise enough money so that the Nationwide Children’s Hospital in Ohio can test a cure. It would be amazing if Eliza’s parents’ claims come true, and that it will erase the virus’ symptoms in her body completely.
That treatment trial though needs about $2.5 million in funds. If there was ever a worthwhile cause, this is it!
Check out the viral video that hopefully will raise that money for Eliza (below) !
[Image via Facebook.]