Ashley Ballou-Bonnema has spent much of her life looking into the future — not too far, just far enough to set a few goals, make a few plans, wish a few dreams.
With a diagnosis of cystic fibrosis looming over her — she wasn’t expected to live past the age of 20 — Ballou-Bonnema knew her future could be limited and limiting. She wanted to envision what good things might happen, but the restrictions of a disorder that took her breath away made that difficult.
“When you live with CF, you do your best not to envision because it is hard,” the Sioux Falls woman said. “It has a track record of being devastating and betraying you in every way shape and form. I struggle with it greatly. It works in my favor sometimes, other times not great. You’re wishing and hoping but having a body and unchangeable circumstances doing everything against that.”
Now, with the help of a prescription medication designed to treat CF in some patients, Ballou-Bonnema’s wishes and hopes seem more possible than ever. And an organization she founded eight years ago is poised to accomplish multiple goals while helping those with CF find their voices, literally and figuratively.
Ballou-Bonnema founded Breathe Bravely in 2015. Its goals include helping individuals living with CF to realize their breath potential through helpful vocal techniques and the foundational mechanics of breathing.
Two years later, in 2017, she started sINgSPIRE, a 10-week program designed to combat CF’s effects through singing. Professional voice instructors offer weekly singing lessons via video calls.
This weekend, Ballou-Bonnema’s focus will be on Breathe Bravely’s Backyard Bash. Originally started to thank supporters, it has expanded to a concert Sunday at Levitt at the Falls, emphasizing the local organization’s ability to make a global impact.
“It’s always been a hope for us that we would be able to hold a type of music festival,” Ballou-Bonnema said. “Our intention will be to raise money for our programming. It’s a way people can help us and support us. My medication costs $300,000 a year. Without that medication, my personal general medical expenses are $30,000. We don’t want people to decide between paying an insurance premium or enhancing their quality of life. Our greatest goal is that the individual not worry about tuition cost.”
Cystic fibrosis is an inherited disease that affects the lungs, digestive tract and other organs. It impacts the cells that produce mucus, sweat and digestive juices. Rather than acting as lubricants, the thick, sticky secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.
Her older brother, Nathan Ballou, was diagnosed with cystic fibrosis shortly after her birth. She then was tested, and it was discovered she had CF. Nathan died four years later, when he was 11.
Throughout her growing-up years and into adulthood, Ballou-Bonnema had music to sustain her. According to her online biography, the years of singing also made a deeper impact. At 27 years old, her lungs were functioning at only 25 percent of capacity. Ballou-Bonnema persisted in pursuing a master’s degree in vocal performance. When she stood on stage to give her graduate voice recital, her lung function was measured at 54 percent.
Breathe Bravely and sINgSPIRE are designed to share the benefits of singing with others. Maren Engel has been part of the latter since the beginning.
“Ashley brought sINgSPIRE to me as a way to provide therapy to provide emotional support, to provide confidence, all of these things I really believe music can do,” Engel said. “It was a gift to give back to the community. I could use my musical passions to do something that felt special and unique and giving a gift to the CF community.”
Students who take part in the individual lessons learn something important, Ballou-Bonnema said.
“This art form is for everybody, and everybody can do it. We don’t quantify whether somebody deserves to sing or good enough or not good enough; it’s about what it did for you,” she said.
“That’s what we’re all singing about. Even someone with 20 percent lung function can hum a bit or sing through ‘Twinkle, Twinkle, Little Star’ or get through one phrase of song. When you get done, it’s like you won the world. It reminds you that you are still in control of your breath, and that means the breath that CF was trying to steal isn’t more powerful than you.”
Paige Pearson Meyer met Ballou-Bonnema through mutual friends 10 years ago and now serves on the Breathe Bravely board of directors, as does Engel. She describes her friend as magnetic, a tremendous listener with an angelic presence.
Someone who met Ballou-Bonnema today might not realize the health issues she has faced her entire life, Pearson Meyer said.
“That’s what catches people by surprise. You look at her, and you see a person that looks very healthy, yet you don’t know the damage that’s been done internally to her organs, particularly her lungs,” Pearson Meyer said.
“She’s a little sneaky. Despite that damage, she would never put those emotional medical burdens on you. She wouldn’t want to do that to you; she’s far too selfless.”
Engel chose the word brave to describe her friend.
“I couldn’t think of a better word than brave,” Engel said. “She has a willingness to be so authentic and brave about what she has gone through. She gives her students the safety and comfort to do the same — and anyone she meets.”
Pearson Meyer and Engel have seen the physical changes in Ballou-Bonnema since January 2020, when their friend began taking the prescription drug Trikafta, three pills twice daily. While Trikafta won’t reverse the damage Ballou-Bonnema already has sustained, she said it has given her a gift she never thought she would experience.
“The greatest thing is it’s giving me stability,” she said. “I had access to this drug because I have a specific mutation. It’s a gene modulator. I call it ‘the influencer.’ It influences my genes to act normally.
“It’s really overwhelming but also tremendously eye-opening. … You’re choosing what makes you feel alive, what makes your life have meaning and purpose. I can honestly tell you every day is like that. It’s one of those things I never thought I’d experience. I’m the one at the end of the day who gets to choose how I use that day.”
Ballou-Bonnema started taking Trikafta in January 2020. Just weeks later, however, her world became smaller again because of COVID. For 18 months, she said, she was locked in her COVID tower. And she was alone — her husband, Mark, was a COVID nurse, so the couple separated temporarily to protect her health. She also was left alone to worry about what Mark was being exposed to.
“All of a sudden having this freedom and not being able to actually live it felt like a cruel irony,” she said. “Looking back, I think it made me live more and realize maybe what living exactly means. It doesn’t mean doing and going and checking off all the things on your bucket list and filling your Instagram feeds with all the things you’re doing. It’s about the conversations and the connections.”
Ballou-Bonnema hopes the pandemic taught people how valuable their time is. She knows people who feel now they guard their time more closely, wanting to share it only on important connections.
She continued her Breathe Bravely connections during the pandemic by strengthening the virtual choir established in 2019 that is comprised of sINgSPIRE participants It originally started because people living with CF cannot share the same space because of cross contamination and infection risk. With a virtual choir, Ballou-Bonnema ensured connections made across a screen, across a choir and across the globe would continue.
Thirty-eight students from all over the world are part of the 20th session of the sing choir. During the week, Ballou-Bonnema will work with about 20 of the singers, while other instructors like Engel see the rest. She will work with students in South Carolina and Canada, Florida and New Jersey. She has seen some of her students for three years.
“CF is a beast, and there are days that are unfair and unrelenting,” Ballou-Bonnema said. “When you can speak to somebody on the other side of the screen, even though you’re in a world of hurt, you don’t feel like you’re alone.
“Singing truly is a catalyst to connection, connecting a community that would never be able to connect in person,” she said. “This is a place to stick it to the disease that not only feels it is suffocating you but suffocating your ability to connect with the people you know best.”
If you go
The Breathe Bravely Backyard Bash will be 4 to 7 p.m. Sunday, Aug. 13, at Levitt at the Falls. Maren Engel, Ashley Ballou-Bonnema and Betty Kay Merkle will perform songs by Jennifer Lucy Cooke. Also performing are singer-songwriter Elena Goodrow and Midtown Coffee Radio Hour. The event will include a tie-dye station kit, Breathe Bravely T-shirts and finger-painting. JJ’s Wine, Spirits & Cigars will provide beverages while Black Iron Waffles will serve food.
