Cystic Fibrosis Hasn’t Slowed Down Macey Horbach On or Off the Ice

Diagnosed at age 10, the 18-year-old Horbach has thrived as a hockey player and advocate for a cure

By Greg Bates, Special to AHAI

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When Macey Horbach started playing hockey at 8 years old, she didn’t have a care in the world.

Horbach’s biggest worry might have been how she was going to play on her shift.

But on Jan. 28, 2010, Horbach’s world was turned upside down. The 10-year-old was diagnosed with cystic fibrosis (CF). The progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time was a hard diagnosis to swallow for Horbach and her family.

Prior to the detection, Horbach had undergone two sinus surgeries in a matter of 18 months. The doctors found polyps in Horbach, so she underwent standard tests to rule out symptoms, which included checking for cystic fibrosis.

“It was a routine screen out and nobody really saw this coming,” said Horbach’s mom, Christy. “When it came back overwhelmingly positive, it was like somebody punched you in the stomach. And, we didn’t even know what that meant.

“It literally changed everything.”

What it didn’t change was Horbach’s desire and determination to continue to play hockey. It never crossed Horbach’s mind to quit the sport she loves.

“It was always something I knew I wanted to keep doing,” said Horbach, who will graduate from Naperville Central High School on May 21. “When I was diagnosed, one of the first things I asked was if I had to, like, stop playing sports. Everyone said no, and that helps a lot.”

Said Horbach’s mom: “Hockey’s been the one thing that we even felt was a constant that it was there before, let’s not change it now because everything else changed for her.”

Those who live with cystic fibrosis — there are only about 70,000 people worldwide living with the disease — are born with the terminal illness. About 75 percent are diagnosed by age 2 and life expectancy is 47. Horbach was an anomaly getting diagnosed at 10.

According to her mom, Horbach might have delayed the diagnosis because she was extremely active as a youngster competing in hockey, soccer, gymnastics and running.

But it’s been hockey that keeps the 18-year-old ticking. In March, Horbach wrapped her playing career for the Chicago Fury 19U team, which is a Tier I program out of Orland Park. Remarkably, Horbach will continue her hockey career in the fall when she heads off to NCAA Division III Aurora University.

Getting a chance to be on the ice helps take Horbach’s mind off what she deals with on a daily basis.

“I think it’s helped her stress-wise over the years,” Christy Horbach said. “She’s a very physical player. She’s probably more physical than the boys are, whether that’s right or wrong. I think that’s proven to be an outlet for her. I think it’s also given her a lot of consistency and discipline over the years and taught her that you do have to do this.”

Horbach loves continuing to have the opportunity to get to play with her best friends on the ice.

“It helps a lot and especially being with my teammates and being surrounded by my best friends all the time because of hockey,” Horbach said. “Besides coughing, I forget about everything else and don’t really notice a difference.”

Cystic fibrosis doesn’t slow down Horbach too much on the ice. Occasionally, she’ll become ill during a shift, jump off the ice, vomit and get right back on for her next shift. She’s a true hockey player, tough as nails.

Horbach has had to test her mental strength for the last eight years as she battles the disease. Full of life and happy to be able to play hockey, those who are close to her have helped every step of the way.

“Definitely all my friends and my teammates who are my best friends and my family and everybody else, they’re just super supportive all the time,” said Horbach while choking back tears. “Everyone else pretty much keeps me going. For 10 years of my life, I was basically a normal kid and my parents have never let CF stop me from doing what I want. I’ve just found time to fit it in and do as much as I can for that and also be as normal as I can.”

What’s also helped has been the amazing hockey community that has enveloped Horbach.

“I don’t think we would have adjusted as well as we did had we not had our hockey community and hockey family with us,” Christy Horbach said. “It was a huge, huge change for her life and her friends’ life and for everything she was doing. One of the big things I’ve always tried to do with her is to not let this define her and to not cut out any possibilities. We worked really hard so she does find all the right opportunities and we don’t let this be — as with anybody with a disability — something that slows them down.

“It’s an extra challenge, and I say that word lightly. It’s a humongous challenge, but we really do work very hard to not let that stop her.”

Cystic fibrosis consumes Horbach’s daily routine. During the hockey season, she has to wake up early to undergo 30-40 minutes of treatment — using a compression vest and nebulizer treatments along with taking a number of pills. The most normal part of her day comes when she heads to school, then home for an hour before heading to hockey practice. She’ll get home at 10:30 p.m., and still have to eat, do homework and undergo more treatments.

It’s taxing, but it doesn’t seem to slow Horbach down.

“She’s a remarkable girl,” said her mom. “She’s a go-getter; she advocates for herself. She doesn’t let anything stop her.”

After her diagnosis, Horbach and her family made it their goal to raise awareness about cystic fibrosis and do everything they can to raise money to find a cure.

Horbach helped start Macey’s Mission not long after her diagnosis. Within the first four months, the Horbach family raised $89,000.

“It was absolutely incredible,” Christy said. “We never would have done it without all the hockey kids and the hockey families and the hockey network and the school. It’s just been great. We’ve had the best support system whether it’s friends or doctors.”

Since the inception of Macey’s Mission, $200,000 has been raised that goes directly to the Cystic Fibrosis Foundation.

Every year, Horbach, her family, friends and hockey teammates take part in a 5K walk. The money Horbach collects for the event goes right to cystic fibrosis research. This year’s walk will be held Saturday, May 19, in downtown Naperville; more information is available here.

Raising money for a cure has already made a difference.

“In 2014, they came out with a new drug that is basically like a cure for a certain strand of CF,” Horbach said. “And then recently, another drug came out to help improve lung functions. Within the eight years that I’ve been diagnosed and been a part of it, they’ve done so much to help everyone. I definitely think there’s going to be another cure or another drug that comes out.”

The entire hockey community is pulling for Horbach on and off the ice.

Story from Red Line Editorial, Inc.

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