As a heart patient, Hunter Chase Henry is unable to do many of the active things other kids take for granted. But he shines as a chef, perfecting recipes and going by “Uncle Hunter” in the kitchen. The name comes from his nephew, Dustin, and nieces, Emma and Claire, whom he calls “Big Bertha” to aggravate their mother, Kacy. 

Uncle Hunter started cooking when he was a patient with Pediatric Cardiology Associates in Baton Rouge and his doctors put him on a low-sodium diet due to swelling. “What I did to make food kind of taste better was get a bottle of Tabasco and put it on peanut butter and jelly,” he says. He continues to experiment with spices and flavors to make tasty foods that work for his dietary restrictions.

In his 14 years, Hunter has had three open-heart surgeries, the first in Chicago when he was a premature newborn after being airlifted from Louisiana. His parents, Robby and Laura Henry, followed. Closer hospitals in New Orleans and Houston were unavailable after Hurricane Rita.

Laura says Hunter’s prematurity and subsequent stay in the NICU turned out to be a blessing, as otherwise he may not have been diagnosed in time.

“We did not know about his heart condition until he was five days old,” Laura says. Doctors heard a heart murmur, and testing revealed that Hunter has hypoplastic left heart syndrome. Only half his heart works as it should. Hunter also has ventricular tachycardia, problems with his liver, and bilateral neurosensory hearing loss, a complication from surgeries.

Now, Hunter needs a new heart and has been on the transplant list for a little more than a year. He must be within an hour of Texas Children’s Hospital when the call comes, so the family waits in Houston rather than at home in Youngsville. A seventh grader, Hunter is able to continue his studies remotely with teachers from his school in the Lafayette Parish School System.

A veteran of many medical procedures and heart catheterizations, Hunter receives physical and occupational therapy and sometimes uses a wheelchair and oxygen. Other kids sometimes stare and point, which is upsetting. “It freaks me out, and sometimes I almost cry,” he says. “I wish they’d ask me what’s wrong and if I’m OK.”

While he waits for a new-to-him heart, Hunter serves on the advisory board for Texas Children’s. He attends monthly two-hour meetings, speaking up for his peers to make positive changes. When thinking about other patients, Hunter says, “I want to tell other kids no matter how sick they are, don’t let that stop them from achieving their dreams.”

Uncle Hunter’s dreams are to own a restaurant, go to Paris and be on the Food Network, specifically to challenge Chef Bobby Flay. “I can cook all kinds of stuff,” he says, listing his favorites: jambalaya, étouffée, enchiladas, gumbo and boudin. Uncle Hunter shares cooking videos on his YouTube channel and is working on a cookbook.

February is American Heart Month, and February 14 is Congenital Heart Defect Awareness Day. “Valentine’s Day used to be Valentine’s Day for me until he was born,” Laura says. “This changed my whole outlook. It’s become my time when I celebrate not just my son but other kids.”

Stubbornness may not seem like a quality worth cultivating, but for Hunter that innate character trait has been key to his survival. “Hunter is a miracle, and he is going to eventually be able one day to have a life that he’s never ever had,” Laura says.