Mother of first-grader with CHD seeks to raise disease awareness

RICHMOND, Ky. (WKYT) – People with Congenital Heart Disease (CHD) don't look outwardly sick, but they are fighting internal battles. Luke Worley, a first-grader at Kit Carson Elementary, fights his daily.

Photo: WKYT/Kristen Kennedy

"He sometimes struggles to play with others because he gets weak and tired," says Julie Worley, Luke’s mother, and member of the Pediatric Congenital Heart Association Kentucky.

"I had no clue about any heart defects in children until my son was diagnosed."

Luke has had four open-heart surgeries, a major stroke from complications of a heart procedure, and brain surgery. Doctors say his life expectancy is ten. His defect is one of the more complicated cases of CHD.

"He has hypoplastic left heart syndrome, which pretty much means he has half of a heart," says Julie Worley.

She says he fills that half heart with a lot of love, from classmates, his teachers, and most especially, his sister, Addison.

"I love to go camping with him. I love to play with him," she says. "He's like a great brother. He's awesome. He's everything that I need."

The Worleys struggle to raise awareness about CHD, and while there's no cure, they are hopeful better funding will bring about better care.

"This has made me really appreciate life and appreciate my babies so much more so I think everybody should hug their kids a little extra tight," says Julie.

CHD Awareness Week runs through Feb. 14. You can find ways to help spread awareness of CHD by visiting

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