WAVE 3 TV Louisville, KY | Community turns out at fundraiser for children with rare terminal illness

Community turns out at fundraiser for children with rare terminal illness

By Lindsay English

LOUISVILLE (WAVE) -- WAVE 3 reported Friday about a Kentuckiana family struggling to care for not one, but two young children living with a rare condition called Batten Disease. Saturday, we were there as the community rallied behind them. WAVE 3's Lindsay English reports the Goreanflo's are working to raise funds to help pay for treatment that is only available out of the country.

There was something for everybody Saturday at Frank E. Simon Park in Shepherdsville.

"We had a really good turnout. It's been amazing. We weren't expecting this many people," says Miranda Goreanflo.

But in this case, it was the more, the merrier.

"We hope to raise a lot of money today," she says.

Miranda's fundraising efforts will go toward what may seem like a lofty goal. But she has two pretty good motivators, her children, 5 year old Hailey and 3 year old Carter. Both suffer from Batten Disease.

"We're fighting for them and we are fighting raise $85,000 to get them stem cells in China," says Miranda.

There is hardly any treatment for Batten Disease. That is why the Goreanflo's feel China is their only option.

"It gives us a reason to keep trying. The outlook is pretty bleak. But as long as there is any hope at all, we are going to do everything we can to get these gets to China and get the stem cell research," says the children's grandmother, Cindy Biebelhauser-Roberts.

As he runs through the grass, it's hard to imagine Carter is progressing towards the same condition as his sister, Hailey. She now spends most of her time in a wheelchair and uses a feeding tube.

"It's hard, as a grandmother, to see your grandkids slip away. So we just hand on and we keep praying, maybe something will happen," says Cindy.

Their story is inspiring many, like volunteer Devon Allen, who had never even met the family until Saturday's event.

"I felt like I really needed to help and I wanted to show their family the compassion we have for them and how sad it is to be in their situation. So we just wanted to help," she said.

It's the kind of hope the family is counting on to reach their goal.

"They deserve a chance and we're going to see that they get it," Cindy added.

If you are interested in helping out the family, you can donate to the Goreanflo Trust at any Fifth Third Bank.

Online Reporter:  Lindsay English

Online Producer: Charles Gazaway