An annual fundraiser is giving courage to those with cystic fibrosis
Ashley Ballou-Bonnema has less than 50 percent lung capacity. She might tire walking along our bike trails before you do or go in for blood draws on a holiday weekend. She might stay home and worry about her liver enzyme levels while you go to a basketball game and not even notice the crowd. For her, every breath is a relief.
But she can sing.
Ballou-Bonnema was born with cystic fibrosis, an invisible disease that causes thick mucus to clog the lungs and the digestive system. This leads to malnutrition, respiratory infections, chronic coughs, salty skin and wheezing. Her older brother died of CF when he was a teenager and would be 44 years old today.
But she still sings.
Our community is so abundant with local nonprofits to support. The Washington Pavilion held its annual gala this past spring and raised nearly $160,000 for its visual arts programs. The Children’s Home Society just raised over half a million dollars at their annual Caring for Kids fundraiser. Sioux Falls Cares delivers meals to families in need every Christmas, and the Ty Eschenbaum Foundation’s annual Earn the Gift Gala raised nearly $240,000 last year for youth cancer survivors. Over 800 people were in attendance.
Last year, with over 350 people in an entire day of rain, Ballou-Bonnema hosted her own fundraiser for Breathe Bravely, a global nonprofit that advocates for people with CF.
They sing.
“Singing has saved my life so many times,” Ballou-Bonnema says. “It’s about the spirit of what our voices can do.”
Breathe Bravely is a local nonprofit that connects people worldwide living with CF through the opportunity to sing. They provide virtual 1:1 voice lessons with professional instructors who promote the foundational mechanics of breathing, good posture and self-confidence.
“Our teachers really understand that it’s not even about the talent or the output,” Ashley says. “It’s about believing in the effort, the potential and music as the tool.”
Singing opens the lungs, for anyone. It requires respiratory strength and breath management that also serves someone with CF very well. The day might be scary, unknown, and the body might be worn, but when someone with CF sings, they feel peaceful and full, not lacking.
Breathe Bravely is a virtual program because people living with CF cannot be in the same room together, for fear of spreading unsafe bacteria with one another. Covid was nothing new for CF patients— they’ve always needed six feet of space and a mask in their purse. Their bodies are incredibly vulnerable, and their time is finite.
But there is still power in the gathering. Ashley says participants join the Zoom call and don’t even talk about CF. They are just grateful to have a safe space together, to understand one another without words, and to not have a secret they don’t even want to keep. For once, they’re understood and free.
“CF isn’t a fair disease,” she says. “It has no remorse. But, it is not what has been given to me. It is who has been given to me in this priceless life. These are some of my best friends! They are my family.”
Ashley has always advocated for herself. She knew the power of singing was serving her lungs well. It was a boost to her emotionally and physically. She feels more in control when she sings. And Breathe Bravely is to give that confidence away.
“Cystic Fibrosis isn’t a fair disease. It has no remorse. But, it is not what has been given to me. It is who has been given to me in this priceless life. ”
“A comfortable place of silence does no one any good,” Ashley says. “It doesn’t promote progress or protect the people I love. Fatigue only begets fatigue, so you can either sit and wallow, or you can do and enjoy. I enjoy.”
This weekend, you’ll be able to watch some of the virtual choirs on the big screen at the Levitt. And you’ll have no idea that their body is not as strong as ours. They are beautiful together. No matter that the song is beautiful or that they are singing beautifully— you’ll be most moved to realize the risk of something as free as a song: They are breathing bravely.
Ashley is among many in Sioux Falls who uses her energy to teach us so that we might support one another with a greater understanding.
I don’t have CF— I don’t know the pain of an embolization procedure or the stress of daily treatments or the fear of a fatal disease— but my friend Ashley does, and if singing makes her feel better, I want to help her sing.
