Hamblen Co. family shares life with ‘special heart’ in hopes of raising awareness

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MORRISTOWN, Tenn. (WATE) — On Valentine’s Day, a Hamblen County family is hoping to share their story – one that’s not about romance but more about health.

February marks “Heart Month” and this week rounds out congenital heart defect or CHD Awareness Week.

According to the Pediatric Congenital Heart Association, one in 100 babies are born with a congenital heart defect.

We spoke with the Akins family who says life with CHD is a roller coaster. Their twin boys had their first open-heart surgeries during their first week of life.

Joshua and Kelby Akins were both born with hypoplastic left heart syndrome.

“It’s really scary but through these 12 years I’ve learned to be brave,” said Joshua Akins.

In those 12 years, Joshua has undergone three open-heart surgeries. But an important part of his story is his twin brother, Kelby.

“We always know that he’s in our hearts,” said Joshua.

Joshua and Kelby were born with hypoplastic left heart syndrome.

“Which basically means the left ventricle or the left side of their heart didn’t develop properly,” said their mom, Mitzi Akins.

“Well I think being born with a special heart is very hard,” added Joshua.

Valentine’s Day is especially hard for the Akins family.

“We actually buried one of our children on Valentine’s Day a few years ago,” said their dad, Lee Akins.

At 8-months old and after his second open-heart surgery, Kelby passed away.

“He was just a joy. When he would smile or start to laugh at something, it always started at his feet,” described Lee.

Mitzi Akins holding her son, Kelby, while in the hospital.

This time of year, there seem to be reminders of Kelby and heart defects everywhere.

“You think, ‘Oh I wish Kelby could be here to do the same thing as Joshua is.’ How would they be torturing their sister if they were together,” asked Lee.

During CHD Awareness Week, the Akins hope all of us come together: “Because the more research we do, hopefully we’ll find a cure for kids that come after Joshua or maybe even Joshua,” said Mitzi.

While it’s a bittersweet time, Joshua’s heart is in good shape and the family is happy he can share his story.

“I think everybody at home should know today that even if you’re born with a heart defect like I am, just keep walking and you’ll be strong,” said Joshua.

When it comes to Joshua’s next surgery, his parents say it’s unknown because every doctor’s visit could lead to a new specialist or procedure.

The Pediatric Congenital Heart Association says there is no cure for CHD however, more than 85% of babies born with a heart defect now live to at least 18 years old.

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