Logan County boy battles a rare heart disease

LOGAN COUNTY, KY.- Eli was born with one of the rarest and most complicated heart diseases found in babies. Doctors knew that this led to a journey full of surgeries.

The left side of Eli’s heart was underdeveloped. Wright also told us how this complex disease required several surgeries throughout his life that impacted his whole family.

Norton Children’s Heart Institute Lucinda Wright MD/ Pediatric Cardiologist says, “It’s tough, both as a family, you know, who has a child with heart disease and also as a cardiologist who takes care of those kids. his family has been so supportive and such a big champion for him throughout his life. And I think that makes a huge difference for patients.”

Eli says his solid support system keeps him upbeat, no matter what it looks like. He says, “Anything, really that would help me like my mother. and doctors, except for the ones who put wires on me.”

His mom, Amanda Mayes, shares her perspective while watching him grow. “When he was born we didn’t know we had anything wrong, and he was about a couple hours old and they called me, and they were like, yeah, we’ve had to intubate your son. So I went from, you know, giving birth to having a child that was on a ventilator.”

Amanda says, “People that don’t know him don’t know that anything’s wrong with him. Despite all his struggles, he’s very inquisitive. He loves life. He enjoys everything. Like he takes it in stride. He makes a lot of jokes.”

Eli will continue to undergo surgeries as doctors and researchers search for a cure that will give Eli the best quality of life. His mom wants to encourage people to keep fighting for your kids, because they can live wonderful lives. Never give up hope.