(ABC 6 News) – During Congenital Heart Defect Awareness Week, a Taopi family wants to share their 8-year-old daughter’s journey of living with a CHD.

Katie Schneider was halfway through her second pregnancy, when she learned her baby had a congenital heart defect.

“They told us what they thought it was, which is something we’ve never heard of, but Hypoplastic Left Heart Syndrome.”

According to Mayo Clinic, the condition means the left side of a child’s heart isn’t fully developed and is too small, so it doesn’t pump blood well. There are treatments for the condition, including heart surgeries and transplants, but no cure.

When Katie and her husband, Tom, learned about their daughter Claire’s diagnosis, they felt lost and had no idea what to expect.

“There was a lot of tears,” said Katie.

“Just the unknown made it hard to think about,” said Tom.

Claire’s first open heart surgery came about six hours after she was born.

“First seeing her in the crib at the hospital, I never knew she’d be able to do what she does now,” said Tom. “I mean, you’d never know the kid be able to walk good, run. She has a good life.”

Over the next few years, Claire would have three more surgeries. Even though she was only a few years old during her last surgery, she has some memories of her time in the hospital.

“When I started to have like my second in a few weeks, when I was a few weeks older, it started a bit scary,” said Claire.

Katie and Tom expected to place Claire on the heart transplant list one day when she was older, but after noticing she was having trouble staying awake on the school bus and performing other daily activities, they decided to add her name in February of 2024.

Claire says she’s excited to eventually get her transplant, but it’s also scary.

The Schneider’s were originally told by Claire’s doctors the wait period for a transplant would be around six to 12 months, but since Claire needs a child’s heart, it’s hard for them to think about the circumstances that will get her one.

“Somebody gets a tragedy while we get a miracle,” said Tom.

When that call finally comes, Claire’s go-bag is already packed with about three days worth of clothes and toys, including a doll from her grandma, ready to rush to the hospital within an hour.

Tom and Katie say learning how to care for the middle daughter’s unique needs has made their marriage stronger.

Despite the unknown road ahead and the fear they feel every day, the Schneider family has learned to take life day by day and cherish every moment.

“Tomorrow isn’t promised, so all I have is hope,” said Katie.

Katie and Tom expressed how grateful they are to everyone who’s shown their family support over the last eight years, and say none of this would be possible without that community.

“She’s been through more in her eight years of life than any of us ever will,” said Katie.