Five-year-old Henry Jones of Salem, Indiana, is one tough kid. He’s been on the heart transplant list for well over a year, eagerly waiting for the right match to come along.

Born with hypoplastic left heart syndrome, a condition where the left side of his heart is underdeveloped, Henry’s heart doesn’t pump blood the way it should. While most kids are running around playing, Henry’s life has been filled with hospital stays, surgeries and doctor appointments — but none of that seems to stop his positive attitude.

While in and out of Norton Children’s Hospital, Henry is always looking for the next adventure, whether it’s playing trains with his favorite nurse, Josh, or riding a special bike around the Jennifer Lawrence Cardiac Intensive Care Unit.

“He’s a fighter,” said Maurice Jones, Henry’s dad. “He’s got an energy that just fills the room. “Unless he’s showing off his battle scars, you wouldn’t know he’s been through so much.”

While life in the hospital has been Henry’s reality for a long time, there’s always a feeling of hope in the air. His family is determined to stay positive.

“We’ve seen other kids who have it worse,” Maurice said. “So we try to stay hopeful. It helps keep us going.”

Even though they’re hopeful, the waiting is tough. Every day, they wonder when the call will come — when Henry will finally get the new heart he needs.

“It’s a weird mix of excitement and anxiety,” said Laura, Henry’s mom. “There are a lot of unknowns. It’s scary, but we know it’s the next step, and it could mean so many more years of life for him.”

For Sarah J. Wilkens, M.D., pediatric heart failure cardiologist at Norton Children’s Heart Institute, preparing for the transplant is just as important as waiting for it.

“The better shape Henry’s in when he goes into the surgery, the better his chances of recovery,” Dr. Wilkens said. “That’s why it’s so important to make sure he’s staying as healthy and strong as possible.”

Henry’s strength and determination have made a huge difference.

“What’s been amazing to see is how much he’s grown and developed,” Dr. Wilkens said. “We’ve been able to help him get as strong as possible during this wait, and that’s exactly what we want — so when the time comes for the transplant, he’ll be ready.”

Until that day comes, Henry and his family will be under the close watch of the heart team at Norton Children’s. And despite the uncertainties that come with heart conditions and transplant, they know they’re in good hands.

 “We’ve made it this far,” Maurice said. “And we’re not stopping now. The best is yet to come.”