They call cystic fibrosis an invisible illness, but for Kenzie’s mum Antonia, the fear has been very real from the very beginning.
“The scariest moment for me was just before she turned one,’’ Antonia said. “I was driving and she was in [her] car seat, and she started to cough and then she was choking. She was not breathing and she couldn’t clear the mucus. It was very, very scary.’’
Kenzie was diagnosed with cystic fibrosis through newborn screening, a shock for Antonia and her husband Chris, who had no idea they were both carriers of the genetic condition.
“We didn't know a lot about cystic fibrosis,’’ Antonia said. “That was the beginning of our journey to figure out what it was and how it would impact Kenzie's life, our lives.”
Today, Kenzie’s treatment is part of everyday life. She takes nine to 10 capsules in the morning, more capsules with every meal to help her body absorb nutrients, and does daily physio to help keep her lungs clear.
But even a simple sniffle can be frightening.
“Any time she gets a sniffle or a cold, we're on edge worrying about whether it’s actually going to get that deep into her chest and get really sick and then whether she'll end up in the hospital again.’’
For Chris and Antonia, research is where hope begins.
“Research is so important,’’ Chris said. “I think that's the only thing that will give Kenzie and other kids like her an actual proper normal life.”
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