Congenital Heart Disease: Nash’s story

 

BROOKPORT, IL – Nash is playing at full speed. His heart is working double time.

“That side will give out eventually,” said his mom, Alexis Hall. Just like Addy Rogers, a local toddler who passed away after complications stemming from congenital heart disease, Nash only has half a heart. The form of CHD he is living with is called hypoplastic right heart syndrome.

“It’s very scary, because you bond with those people,” Hall said. “You really feel a connection with those moms that are losing their kids.” Hall said she went to Addy’s visitation, but had an anxiety attack, because it hit too close to home.

Nash has two surgeries down and more to come in his future. His mom said there’s a chance he may need a transplant one day.

“The bigger he’s getting, the more nervous I’m getting, even though we don’t have a date,” said Hall. “You get so attached. He looks so normal. He acts so normal. He’s like a normal child, but really, he’s not.”

She said what Nash needs is more funding for research to give him and his heart a chance. His last open heart surgery was less than a year ago. Hall said he will be having another to finish off a three step surgery.

These surgeries cost families hundreds of thousands of dollars a year. According to the CDC, the cost for inpatient surgery to correct and care for congenital heart disease costs families more than $1.9 billion a year, nation wide.

Addy’s parents are also sharing their daughter’s story. To hear their interview and to find out how you can help the Rogers family, click here.

You can find out more information about this story and others by following Leah Shields on Facebook and Twitter.

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