GREAT STRIDES: A family’s story with Cystic Fibrosis

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LELAND, NC (WWAY) – This week we are highlighting families who day in day out work to combat Cystic Fibrosis (CF). WWAY is doing this to show you the lifestyles of those who have loved ones with the genetic disease.

IV at clinic
PHOTO: Shaw Family

You can learn more about CF’s side affects and symptoms here.

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There are thousands of families that care for a family member who is a patient with CF. One of them is the Shaw family.

Their son IV’s diagnosis was unlike many patients with CF.

“We went to the doctor and said there’s something wrong and they couldn’t figure it out and I think my wife probably self-diagnosed IV quicker that the hospitals did. You know just by way of Google. And somehow stumbled upon Cystic Fibrosis,” said CT Shaw, IV’s father. “She even mentioned it to the doctor. They referred us to Chapel Hill. That’s where we went and they did the sweat test and that’s when we figured out six months into his life that he had Cystic Fibrosis and that he needed to be on the enzymes to absorb the nutrients.”



It was a phone call, that many parents have received and still remember.

“We got the call later that day before we made it back here to Leland that IV has Cystic Fibrosis,”said Shaw, “As a parent you can hear that phone call as I sit here and think about it. From that minute on things changed but we decided pretty early within a week that we were going to be grateful for what it wasn’t versus what it was.”

That call came more than six years ago. IV was diagnosed with CF containing two gene mutations of the F Delta 508 gene.

“One of my questions to the doctors when they first diagnosed him, diagnosed IV with Cystic Fibrosis is what does that mean,” asked Shaw. “Does everybody that has Cystic Fibrosis have the same Cystic Fibrosis? His words to me were, IV will write his own book. Or IV will write his own story.”

IV was the Shaw’s second child. CT says his older sister prepared them for another child, but everything changed with the diagnosis.

“Every morning he wakes up to a vest,” said Shaw. “He’s taking Orkambi in the morning and at night. He’s doing inhalers and then his typical consumption of enzymes before he eats breakfast but that’s pretty much it in the morning just the vest treatment and the inhaler and all of those pills, I would say one, two, seven, eight pills before breakfast.”

Shaw says by the end of the day, IV will take nearly 30 pills to help him maintain weight and fight off other afflictions as a result of his CF. The Shaws’ story though is not one of consistent defense of the disease, but consistent living alongside it and besides the fact of it.

“As far as activities, outdoor activities and sports our thing is soccer, which I get to coach him, tennis he does tennis every week, and they’re a little fascinated with golf he and his sister and I think that has to go with me watching golf every Sunday being in the golf business,” said Shaw.

The Shaws are one of the most active CF families in the Cape Fear. Whether it’s mom, Holly, taking to the radio airwaves to promote events for fundraising, to them watching their son run, surf, and tee off at the many CF fundraisers they take part in.

The Shaws host a series of fundraisers including the Four IV invitational that takes place each fall.

“It’s certainly not my mission to I don’t know have people feel pity towards the Shaw family or IV or those with Cystic Fibrosis, but it is nice, I’d like for people to know if they choose they will be a part of something that I think is going to be miraculous in the way that be a part of a cure,” said Shaw.