Greenville family wants to spread awareness about daughter's rar - WNCT

Greenville family wants to spread awareness about daughter's rare condition

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GREENVILLE, N.C. - After a Greenville baby was born with a rare birth defect, doctors gave her a 20% chance to live.    

Even with the odds stacked against them her family never lost hope. Now, two years later, the toddler is doing what many people thought she would never do.

Before she was ever born, doctors diagnosed Kennedy Clark with a congenital diaphragmatic hernia. The birth defect causes a hole in your diaphragm, the muscle under your lungs that’s responsible for breathing.

"I was very scared when they initially told me that she had CDH because I did not know a lot about it,” said Kennedy’s mom, Ashley Clark.

"I think the first thing we wanted to do was find out exactly what we were dealing with,” said Kennedy’s dad, Hunter Clark.

Kennedy’s parents turned to their family for support, including Kennedy’s aunt, Amanda Pollard.

“We had never heard of CDH before and after researching it's just as common as cystic fibrosis although you never turn the TV on and see it and you don't see a lot of research on the internet about it.” said Amanda.

CDH affects about 1 in every 2,500 babies. Only about half of them survive. Kennedy’s family knew the odds weren’t in her favor.

"Nothing prepares you for when you go in and see her hooked up to what seems like 100 tubes in a coma. That part was really tough,” said Kennedy’s dad, Hunter Clark.

Kennedy spent the first three months of her life in intensive care at Duke Hospital. After just a few months at home, she was back in the hospital for pneumonia. That’s when doctors discovered the hole in her diaphragm had reformed. She needed surgery.

Now, as Kennedy’s 2nd birthday approaches, she’s making enormous strides. Her family’s doing everything they can to make her life as normal as possible.

“As of right now she has her oxygen 24/7 but we're going to start reducing that. At night time she's tube-fed so she's eating all her meals by mouth now which is a big deal. She was on a 24-hour feed when we first got home from the hospital,” said Ashley.

In the toughest of times, Kennedy has been this family’s driving force. She’s still going strong.

Long ago it was a rare birth defect, it's now a common birth defect, just rarely survived...so Kennedy...she's definitely our hero,” said Amanda.

As part of Kennedy’s title as “Baby Miss Princess of NC” she’s raising money for critically ill children across our state.    

If you’d like to donate in Kennedy Clark's name visit: http://victoryjunction.org/



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