Fundraiser for 4 Year Old With Rare Disease
Fri, 31 Jan 2014 23:58:44 GMT — Columbia (WACH) -- Eliza O'Neill reads and plays with her toys like any other girl her age.
But she has been diagnosed with Sanfilippo Syndrome.
It's a rare condition where her cells can't get rid of waste.
It makes her hyperactive and leads to severe brain damage.
"we can't go out to dinner. I mean you can, but it's just you'll probably be there for 15 minutes to order the food and get it to go. It's very difficult to do things and most of it is safety. She could run into the kitchen or run out the front door and things like that and there's no sense of fear." says her dad, Glenn O'Neill.
There are no treatments or a cure for the disease.
The family is asking for help in funding a clinical trial of a possible treatment....but it costs nearly 2 million dollars.
"this is literally the final hour for Eliza. If this clinical trial does not get funded and it doesnt happen this year, the outcome for Eliza is certain." says O'Neill.
The O'neill family is putting on 2 5k races in the next month to raise money.
They've also asked family and friends for anything they can help with.
They've even passed out letters around town trying to raise awareness.
"we went around the neighborhood sending out flyers in mailboxes on our bikes." says her brother, Beckham.
They say they're grateful for Columbia's help.
But they're in urgent mode... Because Eliza may not have much longer.
"the alternative is there is no alternative. The alternative is to watch your child fade away, suffer and eventually die." says O'Neill.
You can register for the 5k's at www.strictlyrunning.com