Jace Connor is 4 years old, lives in west Cobb County, and carries a Buzz Lightyear backpack everywhere he goes. Inside it isn't toys. It's a PICC line feeding the medication Milrinone directly into his body around the clock, keeping his failing heart pumping.

Jace was born at Kennestone Hospital in 2022 and diagnosed days later with left ventricular noncompaction cardiomyopathy, a rare condition affecting roughly 12 in every million people, according to the Cleveland Clinic. His heart cannot pump blood adequately to support his body.

His mother, Katie Soto, described the shock of those early days to the Marietta Daily Journal in a story published Thursday, July 23.

"It was scary, especially having a firstborn with no conditions and then going through the whole pregnancy (and) not getting it detected," Soto said. "They couldn't pinpoint (the diagnosis) and told us to pack a bag and go straight to Children's."

Jace's cardiologist, Dr. Chad Mao of Children's Healthcare of Atlanta, has described the boy's condition as end-stage heart failure. The only true treatment is a heart transplant. Jace was listed for a transplant in 2023 and has been matched twice, but neither led to surgery.

He takes nine medications daily. The most critical is Milrinone, delivered continuously through that Buzz Lightyear backpack.

On Friday, May 15, Jace was readmitted to Arthur M. Blank Hospital in Atlanta for a new catheter line. Complications kept him there more than a month. Doctors considered connecting him to a ventricular assist device to take over pumping his heart. Instead, they tried a new medication that brought his heart resistance pressures down.

He went home June 26, a week after "Toy Story 5" opened in theaters on June 19.

Jace had spent his hospital stay telling nurses he was going to see the movie. His mother wasn't sure how to break it to him that he might not make it to a theater. But once he was discharged, the family celebrated. Dressed in his favorite Woody T-shirt, Jace, his parents, his 7-year-old sister Miliana, and his best friend Lily drove to the movies. He watched "Toy Story 5" wearing his Buzz Lightyear backpack and eating popcorn from a Lightyear-themed bucket.

Over four years, Soto estimates her son has watched the Toy Story films more than 100 times. The franchise has been a consistent source of comfort through hospital stays, where Jace spends time in "The Zone," an area of Arthur M. Blank Hospital where kids play video games and interact with other patients.

Dr. Mao told the Marietta Daily Journal that despite the severity of his heart disease, Jace is always happy and playful, bringing joy to everyone on the heart transplant team.

The family continues to wait for a call confirming another transplant match. No timeline has been set. Once Jace receives a new heart, the Make-A-Wish Foundation has arranged for the family to visit Disney World so he can meet his Toy Story idols.

Georgia residents who want to join the organ donor registry can do so at donatelifegeorgia.org or at any Georgia Department of Driver Services office. One organ and tissue donor can save or improve up to 75 lives.