Fighting hard to grow up healthy
For most of her childhood, Amber was seen in the Cystic Fibrosis Care Center at Children’s Mercy by a dedicated team of health care professionals.
Today, the clinic is fully accredited by the Cystic Fibrosis Foundation. More than 260 families from across Missouri and Kansas receive specialized care for their children here.
Like many people with CF, as Amber was growing up, she suffered from CF-related complications including lung infections and intestinal problems, but her mom kept bringing her back to the clinic to get the care she needed for this complex disease.
“Children’s Mercy was where we first learned about cystic fibrosis and Amber’s nutritional needs,” said Lisa Dalziel, Amber’s mom. “We didn’t have the internet back then. The clinic is where we got all of our instructions for keeping Amber healthy.”
It was also where Amber and her mom got some much-needed inspiration after her diagnosis.
“I was just a little girl when my mom and I were at a CF appointment at Children’s Mercy,” she recalls. “There were sisters in the waiting room with us. I think they were twins in their teens. They both had CF, but they had good color in their cheeks, their weight was normal, and they didn’t look like they were struggling. They looked healthy.”
“Those girls were an inspiration for my mom,” Amber added. “They gave her a lot of hope that I would be that healthy when I reached their age. Looking at them, my mom realized that a life expectancy of 20 doesn’t mean 20 for everybody.”
With continued support from the CF Clinic at Children’s Mercy, Amber grew healthy and strong, like the girls in the waiting room.
In high school, she took part in gymnastics, cheerleading, diving and martial arts. “I was never a serious athlete, but I never let CF stop me from doing what I wanted,” Amber said.
In her teens, Amber transitioned her care to the University of Kansas Medical Center. And though CF sometimes knocked her down, she always got back up.
“I had the mentality that I was going to live a full and active life and I was going to do it on my terms. I was just going to drag CF along for the ride,” she said.
As a young adult, she graduated from college and taught elementary school for eight years in the Olathe school district. She got married, had a baby, got divorced, started a new career as a professional photographer, got remarried and added four stepchildren to her family. Amber just kept going.
But by the time she reached her early 30s, Amber admitted she began to see a decline in her respiratory symptoms and pulmonary function.
“I was getting sick more often and I was having to do two-week rounds of antibiotics to fight these lung infections. I definitely noticed a change in my health,” she said.