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Cystic Fibrosis Advocate Jennifer Jaetzold, photo by Carter Rose

Meet Cystic Fibrosis Advocate Jennifer Jaetzold

The Colleyville mom has two kids with cystic fibrosis and one typical child.

Jennifer Jaetzold is a woman of many talents: crafter, DIYer, fitness buff, former pediatric occupational therapist, wife to Cory, and stay-at-home mom to Lainey, 11, Graeme, 8, and Conner, 6—two of whom have cystic fibrosis, a disease that causes persistent lung infections.

The Colleyville mom and her family have not only learned how to manage life with cystic fibrosis, but tackle it head-on. Jaetzold, 39, is a proud advocate who single-handedly brought Touch-A-Truck to North Texas, an event raises awareness and a significant amount of money toward finding a cure for the disease. We sat down to learn more about her life and how cystic fibrosis is just one small part of the bigger picture.

Editor’s note: Touch-a-Truck will not be returning in 2022, unfortunately, but you can join the Cystic Fibrosis Foundation’s Great Strides 5K events on May 15th in Fort Worth and May 21st in Dallas. Both are held in-person and virtually.

DFWChild: So often, medical and genetic diagnoses can rock a family to its core. How did the double diagnosis of cystic fibrosis impact your life and the plans you and your husband had for your family?
Jennifer Jaetzold: We were definitely faced with some decisions after Lainey was born. Cystic fibrosis is a genetic condition and we learned there was a 25 percent chance that any other children we had might also have cystic fibrosis. So you do have to reexamine your life a bit and ask that question, “Are we going to have any more kids after this?”

For our family, it was a very personal choice. It was something that we prayed about and felt led to do, regardless of whether they would have a diagnosis. We knew almost from the beginning that we would be able to handle it. We knew we were going to be OK and we decided to move forward because family was so important to us.

C: But it certainly must impact your life in many ways. What does your day-to-day look like with your children and how does cystic fibrosis take up space in your family?
JJ: Cystic fibrosis affects our lives in the sense that it steals time. It takes away things the children want to do on a daily basis. Lainey and Graeme present symptoms very differently and need different treatments. Right now, they receive breathing treatments in the morning and the evening, which can take several hours. They also receive a lot of oral and inhaled medications, and wear an airway clearance system that shakes their lungs and loosens up all of the excess mucus that builds up in their lungs. We have to do this even more when they are sick—sometimes every two hours.

“And you have to tell yourself that they are living beautiful, fulfilling wonderful lives because you are enough.”

C: Despite the time it takes, you and your husband have become fierce advocates and educators for cystic fibrosis. How did you make the decision to use your voice for the greater good instead of just quietly dealing with the diagnoses?
JJ: As a therapist, I worked with kids who had special needs and saw how it could be difficult for a parent to be in a position of advocacy without a support system in place. In hindsight, I think it was definitely God showing me, “You’re going to be here one day.” When Lainey was first born, we went into a cystic fibrosis clinic and I remember feeling so overwhelmed.

We were then introduced to the Fort Worth chapter of the Cystic Fibrosis Foundation and we saw that we could start to share what we were fighting for and compassionate about. I created a cystic fibrosis moms group, which has turned into a beautiful community. We decided that we could share this journey and adventure. We don’t sit around and think about how awful it is. It’s never about “you can’t,” but rather, “Let’s take care of ourselves so that we can live our lives normally.”

C: You also brought Touch-A-Truck to North Texas, a wonderful event that allows children to get up close and personal with all kinds of vehicles and machinery, as well as the opportunity to meet those who protect and serve our community. How does this event raise awareness for cystic fibrosis?
JJ: This was the first event for the Cystic Fibrosis Foundation that developed from a family perspective. Past events would be marketed toward adults. My husband and I were trying to figure out what kind of event do we want to create, and we knew we were passionate about families and children. We had heard about Touch-A-Truck in other communities and I remember thinking that our boys would love it.

I told my husband we should start one in DFW to bring awareness to the community and the schools, where people can attend this really fun, family-friendly event. They may not even know that it is a cystic fibrosis event, but then they show up and learn and get involved. They spread awareness, bring more people and it all creates another level of being able to reach out and educate.

We are so humbled by everyone who has supported this event, knowing that the money we raise is going to an organization that is moving forward toward a cure and the lives of my kids and so many others. There is nothing better for me than to know that people want to be a part of changing my children’s lives for the better.

Cystic Fibrosis Advocate Jennifer Jaetzold, photo by Carter Rose
Pictured: Jennifer Jaetzold with children Lainey and Graeme

C: What are the biggest challenges to being a mom of three?
JJ: Time is one of the biggest things. As a mom, you constantly question if you are providing each child with enough time. We can have a lot of mom guilt wondering if we are giving children with special needs their time. Am I giving my child without special needs enough time? It’s so important to take a step back and tell ourselves that we are doing a good job and that we are providing everything they need. As mothers, we struggle with, “Am I enough for my kids? Am I doing enough?”

And you have to tell yourself that they are living beautiful, fulfilling wonderful lives because you are enough. We can fall into traps and it’s so important to remind ourselves of this all the time. Especially as a mother of [children with] special needs, where there are so many decisions to make. It can tear you up wondering if you are making the right decisions. But you have to always say, “Yes. You are enough. You are capable.” 

RELATED: See which local Colleyville park Jaetzold raves loves for family playtime.

C: On that note, what motivates you as a mother, woman and advocate?
JJ: I would say that it’s purpose. I’m motivated by the fact that it’s not about me—it’s all about others and how I can impact those around me. I question how I can I make a difference in my children, my community, my cystic fibrosis network. Purpose motivates me above all to be the best mother, woman and advocate.

C: How has cystic fibrosis changed your life for the better?
JJ: It’s made me focus on what matters most. It’s made me slow down and realize just the importance of family, faith and showing our kids that we can do anything that we set our minds to. It showed me that it’s OK to be scared and to hurt but we can come out on top. I learned how brave I can be when things are really scary. When we stick together as a family, we can go against anything that comes our way because we are in this together.

This interview was originally published in DFWChild’s Thrive Spring 2019 issue.