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KCTV 5: New drug discovery causes Kansas City girl's rapid cystic fibrosis recovery

By Amy Anderson

Cystic fibrosis is a serious disease, and one that affects some 30,000 people in the United States with more than a 1,000 diagnosed every year.

It used to be that a diagnosis of cystic fibrosis meant a life cut short. Many patients wouldn’t live past their 30s or 40s.

But, there’s new hope. A drug that was tested in Kansas City at Children’s Mercy Hospital is already making a huge difference.

You’d never know by looking at 16-year-old Myah Mackey that there was anything wrong. The bright, beautiful sophomore in high school is like any other kid.

“Some of the things I really enjoy doing are soccer. Yeah, I like playing with my friends. I like going out to eat, and I really like babies. I really like babysitting,” said Mackey.

She’d been showing symptoms since she was 18 months old, but doctors called it everything from allergies to asthma.

“Something in the back of my mind I thought there’s something else going on. There’s something wrong with her. I just had a feeling,” said Myah’s mother, Maria Mackey.

“Her doctor called and said that in fact she does have cystic fibrosis,” said Maria Mackey.

“So things were looking really concerning and dire for her," said Ellen Meier, a pediatric nurse practitioner at Children’s Mercy.

Meier has been treating Myah Mackey for years. She and other doctors were concerned.

That’s when Trikafta, a drug trial, came along, and Myah Mackey qualified for the study.

The drug is expensive costing more than $300,000 a year, but Meier says the manufacturer vows to make sure anyone who needs it, gets it.

For Myah Mackey, it's a huge change in her life.

“I’m very hopeful for the future," she said.


See the full story via KCTV 5

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