Every Second Counts With Incurable Disease - DatelineCarolina

Every Second Counts With Incurable Disease

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Eliza O'Neill was diagnosed with Sanfilippo, a rare, terminal genetic disease at the age of three. Eliza O'Neill was diagnosed with Sanfilippo, a rare, terminal genetic disease at the age of three.
Her parents Cara and Glenn O'Neill know there's limited time to find a cure. Her parents Cara and Glenn O'Neill know there's limited time to find a cure.
Eliza's family is trying to raise an extra $85,000 to help reach their goal. You can donate at SavingEliza.com. Eliza's family is trying to raise an extra $85,000 to help reach their goal. You can donate at SavingEliza.com.
Eliza's brother Beckham has only one wish for his upcoming birthday: for Eliza to get her medicine in time. Eliza's brother Beckham has only one wish for his upcoming birthday: for Eliza to get her medicine in time.

By: Blake Lipton

Family time is something the O'Neill family cherishes, but time could be running out.

"You just start getting to know your child's personality around four or five and then the disease just begins to take them away," says Glenn O'Neill.

His daughter, 5 year-old Eliza O'Neill, was diagnosed at age three with Sanfilippo, a rare, terminal genetic disease. Now the illness is starting to take its course. 

"We've seen increasing hyper activity, we've seen changes in her speech for sure," say her mother Cara O'Neill. "She hasn't learned the way you would expect a normal child to learn."

In an effort to find a cure and help other children like Eliza, the family raised more than $1.9 million through their Cure Sanfilippo Foundation to help fund a clinical trial at Nationwide Children's Hospital in Ohio.

"It's just the beginning, there is so much more work to be done. We don't want any parent or family to have to live with what we're living through and what other have gone through," says Glenn.

Glenn is making the most of every moment with her daughter because as time passes without a cure for Eliza, he knows she won't get better.

"You see her running around now, still saying words which is fortunate at this age she can still do, but it's not much longer this is going to be happening," he says.

Eliza will lose all bodily functions and pass away in her teens once the disease is full blown.

"That's what happens to every Sanfilippo child right now with no cure and no treatment," says Glenn.

In a last effort to reach the goal, the family launched a campaign hoping to raise $85,000 by November 16th, Eliza's sixth birthday.

He older brother Beckham has a birthday a few days before and has only one wish.

"I hope Eliza gets her medicine in time."

If you ask Eliza how she's feeling...

"I'm okay! I'm okay!" she says ecstatically.

Words of strength from a five year-old fighting for her life.

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