Story by Amelia Jost. Her daughter, McKenzie Jost, relies on expert care at Sanford Children’s Hospital in Fargo for cystic fibrosis.
Some may look at my goofy, smiling 11-year-old daughter, McKenzie, and think, “She doesn’t look sick.”
What you don’t see are the hours she spends every day undergoing treatments for cystic fibrosis … the times when she can’t breathe and turns purple … or a little girl who has had to grow up too fast.
McKenzie was diagnosed with cystic fibrosis shortly after birth. The disease means her body produces extra thick and sticky mucous that can build up in her lungs and cause bacterial infections.
Twice a day, McKenzie is strapped into a vibrating vest to loosen the mucous and hopefully prevent her illness getting worse. She’s been doing these treatments for as long as she can remember.
For a while, her disease seemed under control, but over the last few years, her cystic fibrosis has gotten progressively worse.
This year alone, McKenzie was hospitalized five times. That’s five times she was away from her four siblings for more than 10 days. Five times she missed school. Five times she was stuck in the hospital without visitors as we tried to keep her and other kids safe from COVID-19.
It’s been a difficult journey, one we are still struggling with every day, but we are so grateful for the care McKenzie receives at Sanford Children’s Hospital in Fargo. I can’t imagine where we would be without the support of her caregivers and all those who donate to Sanford Children’s.
We travel two hours each way from our home in Casselton, N.D., for McKenzie’s care, but we wouldn’t go anywhere else. We count on the expert care, specialized testing and treatment equipment available at Sanford Children’s. McKenzie counts on her doctors, nurses and friends in Child Life. They help her remember what it’s like to just be a kid, making art and playing Mario Kart.
With an amazing team behind her, and supporters like you, she can continue to battle this disease.