Cystic Fibrosis: Amber’s Story

Meet Amber

Only one day after Amber Dawkins was born at an area hospital in 1984, she was transferred to the Children's Mercy Level IV Neonatal Intensive Care Unit for surgery to clear a severe intestinal blockage.

Following the operation, doctors suspected she might have cystic fibrosis (CF), a genetic disease that causes frequent lung infections and intestinal problems.

The genetic mutations in people with CF cause a protein called CFTR to stop working correctly, resulting in a thickening of the mucus in the lungs, pancreas, liver and other organs. Over time, the disease becomes progressively worse, making it difficult for the individual to breathe and causing a number of other health issues, including frequent infections, growth problems, liver disease and fertility concerns.

Testing confirmed Amber’s diagnosis and the doctors delivered the news to her family—the life expectancy for most CF patients was only 20 years at the time.

But Amber is a fighter—a CF warrior!

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.

Added inspiration

About that same time, Amber found added inspiration in her lifelong battle with CF, and an important new ally.

“I had gone to Union Station to watch a live course testing session for ‘American Ninja Warrior’,” Amber said. “I was a fan of the show, but I didn’t realize that just anyone could go test the course. I wanted to know where I could go to learn more and become a course tester the next time the show filmed in Kansas City,” she said.

Amber connected with a local climbing gym in Overland Park, where her coach told her she shouldn’t be testing the course—she should be competing on it. At age 32, she was now focused on balancing her desire to compete with the need to stay healthy.

“The antibiotic I was on for the lung infections caused my tendons to be more brittle and susceptible to spontaneous rupture. I had to stop training each time I was on the medication, which was sometimes discouraging,” she admitted.

But Amber fought on. She discovered laches are her special ninja skill, a move where she swings back and forth from a bar, then literally hurls her body 8 feet through the air to the next bar. “I love doing anything where it feels like I’m flying. I just love it.”

CF Warrior Ninja!

A few months after Amber started training, she entered her first ninja competition, and within six months, she was competing at the world finals for the National Ninja League.

Then, at the beginning of 2020, Amber’s doctors started her on a new CF drug called Trikafta. The medication has made her cough all but disappear, and has significantly improved her pulmonary function.

“Each week I take 182 pills to fight CF,” Amber said. “I have baskets full of prescription bottles, inhalers, nebulizers, vials, airway clearance devices, an insulin pump and continuous glucose monitoring supplies.”

All that, plus a lot of hard work and determination, have made it possible for Amber to dream bigger than she ever thought possible.

“In the middle of the pandemic, I got the call to compete on ‘American Ninja Warrior, Season 12,’” Amber said. “They usually receive about 100,000 applications, and picked 150 competitors this season. I had actually stopped all training during the shutdown and only had three short weeks to get myself physically and mentally prepared to compete alongside ninja’s top athletes!”

And complete she did. Though Amber can’t reveal the show’s results, she hopes her appearance will shine the spotlight on CF. She even chose her ninja name to highlight the cause—CF Warrior Ninja.

“When I was a kid sitting in that waiting room at Children’s Mercy all those years ago, we never imagined this,” Amber said. “I’m competing at an elite level on the biggest course, on the biggest stage, alongside the best in the sport. This is a dream come true for me.”

And for others fighting CF like Amber, she has this advice. “The CF community as a whole, patients, caregivers, families, doctors, researchers and scientists—we’re all on the same team, we all bring something different to the table, and we all need each other.

“Find a care team who is dedicated to treating you, who can get you the resources you need to fight this disease,” Amber said. “Don’t forget to be consistent with your treatments! That’s key to overcoming CF.

“I hope to be an inspiration to others living with or caring for family members with CF, like those girls in that waiting room at Children’s Mercy were for my mom. I hope the message is clear to all those who need to hear it. We are strong. We are resilient. We are unstoppable. We can conquer any obstacle. We are CF Warriors!”

Programming note: The "American Ninja Warrior" episode featuring Amber aired on Monday, Sept. 21, 2020 on NBC.

Ready to schedule an appointment?