NEW ORLEANS — A family in Covington is trying to raise awareness about a topic that's tough for any parent to think about. We often hear about how vital organ donors are for saving lives, but children donors are not typically a part of that conversation.
In this family's case, though, an organ donation would save their daughter's life.
"Pretty incredible kid," John Thomas said, describing his four-year-old daughter. "I say she's four, but she's on the maturity level of a sixth grader. She's extremely spunky, that's the best way to describe her."
Ava Thomas was diagnosed with cystic fibrosis (CF) at three weeks old. CF is a rare genetic disorder. People with CF have thick and sticky mucus that blocks airways, damaging your lungs and trapping germs, making infections more likely.
Ava has remained healthy and out of the ER until six months ago, when her health took a quick downturn.
"She started to have labored breathing," Thomas said. "Come to find out, she had developed pneumonia in both lungs."
Doctors said she needed to be put on ECMO.
"It basically gives her lungs a rest, it takes the blood out the body, oxygenates the blood, and puts it back in," Thomas explained.
It's only a temporary solution. Ava was transferred to Texas Children's Hospital in Houston six months ago to wait for new lungs.
"Immediately. It needs to happen soon," Thomas said.
She's been on a transplant list for several months.
"She's top of the list," Thomas said. "It's just very hard to find her size lungs."
Organ donations in children is a tough subject.
"It's not talked about," Thomas said. "One big thing people really don't realize is how important organ donation is, and you don't think about it when it comes to your kids if something would have happened to your kids. At that time, you're so traumatized that you don't think about the organ donation aspect."
Thomas is making weekly trips between Houston and Covington to work as his wife stays with their daughter, waiting for that call.
"It can happen at any second. It's just a waiting game," Thomas said. "We will spend Thanksgiving in the hospital. More than likely, we will spend Christmas in the hospital. It hits pretty hard."
To stay updated on Ava's progress, follower her mom's blog on Caring Bridge.
A GoFundMe account was created to support the family.