WAVE 3 TV Louisville, KY | Parents holding fundraiser for their two terminally ill children

Parents holding fundraiser for their two terminally ill children

By Elizabeth Donatelli

LOUISVILLE (WAVE) - It's a heartbreaking and inspirational story as one family struggles to stay together with two kids battling terminal illness. WAVE 3's Elizabeth Donatelli has more from a family who continues to hope for the best while struggling against all odds.

All parents know what it's like when their kid has the flu - you have to call in sick to work, et their homework assignments from school and be there to comfort them.

But imagine doing it every day without knowing when or if your child is going to get better. That's how it is for the Goranflo family.

When we visited recently, Miranda Goranflo greeted us with a big smile, and her 2-1/2-year-old son, Carter, enthusiastically played with his toys.

But it wasn't until we met her 5-year-old daughter during her breathing treatment that you could tell something was wrong.

Haley has Batten Disease, which is fatal. It started with seizures, and now she sleeps more than half the day and is unable to sit up.

Her parents, Miranda and Neil, take care of her every day, and are trying to raise money to seek an experimental stem cell treatment in China that would stop the disease from progressing.

"We don't know how much time we have left with Haley, we really don't. And we just - she needed this treatment a long time ago - so we need to get her the stem cells as soon as possible."

"The chances of this happening are two to four in 100,000," said Miranda.

Carter helps take care of his big sister, and kisses her when she is going under a breathing treatment, but he too was diagnosed with the disease in January.

"She's just regressed and regressed until she's gotten to this point," said Miranda. "Carter has the same thing and he is expected to be like her soon. He will lose the ability to walk and to talk and he recently started having seizures also."

Right now, there is no cure.

"We have good days and bad days - and really bad days - but for the most part we just try to stay positive about it, and we just really stay focused on fundraising," said Miranda of her and her husband Neil.

They are trying to raise the $85,000 needed to get an experimental stem-cell treatment in China. 

One fundraising event is this Saturday, May 24th, at the Frank E. Simon Park in Shepherdsville. The event starts at 3 p.m., and will feature live music, basketball tournaments, and games for the kids.

All of the money raised will go to a fund to pay medical bills for Haley and Carter.

If you'd like to help, you can make a donation to the Goranflo Trust Fund at any Fifth Third Bank. For more about their story, you can visit the family's website at: http://haileyandcarter.wordpress.com/

Online Reporter: Elizabeth Donatelli

Online Producer: Michael Dever