FOREST ACRES, SC (WIS) - As the government shutdown began, we introduced you to Glenn and Cara O'Neill and their daughter, Eliza, who was battling a rare terminal disorder.
Eliza is only 3 years old, and is more concerned with her toys and dress-up clothes. But her parents know how serious her genetic disorder really is and why the end of the shutdown was key to giver her a fighting chance at life.
We've visited the O'Neills at their home several times after the shutdown began.
Eliza was born with something called Sanfilippo Syndrome, a genetic disorder. Her diagnosis came this summer when the O'Neills were told Eliza would slowly lose the ability to talk and walk. Most children with Sanfilippo don't live past 15.
After the shock, they also learned there's hope for a cure in Ohio, where a clinical trial has cured it in mice and is heading towards a human trial next year.
Then the shutdown shut down the research.
The O'Neills heard from several members of South Carolina's Washington delegation in the past week or so. Cara says she was surprised to hear from Congressman Joe Wilson, but disappointed to learn that he voted against the deal.
"Well, I did have a couple of very nice conversations with him and I appreciated his interest. The senator's office also contacted us and were interested in helping. So, I guess I was a little surprised by some of the votes," said Cara.
Cara and Glenn are now focused on raising money to fund the research. Several events are planned this fall.
For more information on helping Eliza, make sure you find her page on Facebook.
Fundraising really picked up after our stories aired. Cara says it helped raise awareness, but they would have rather had that research going on that could save Eliza's life.