Someone You Should Know: The gift of song
A Sioux Falls woman is creating a sense of community for people with a rare life-threatening disease and she's doing it through the art of singing.
That's why she is this week's Someone You Should Know.
The 33-year-old musician has cystic fibrosis, a progressive genetic disease that gives people a life expectancy of just 41 years.
"Most commonly, individual’s die of respiratory failure,” says Ashley Ballou-Bonnema.
CF primarily affects the respiratory system for many who have it, including Ashley.
"I have all this excess mucus over the years that creates a breeding ground for infection and that infection turns into scarring which turns into lower lung function,” says Ashley. "I can wake up and know instantaneously if it's going to be a hard breathing day or if it's going to be an easier breathing day."
Singing helps Ashley stay "in tune" with how her body is feeling.
"I can be able to say 'Today I'm going to sing this piece of music' and these two measures yesterday felt really great, now I can't sing those two measures fully without needing a breath or without really being challenged."
It's an awareness that she knows is worth sharing.
So, she and other instructors give singing lessons to people around the world with CF through her non-profit "Breathe Bravely."
"The number one thing that we talk about is breath and so if you understand your breath and build that respiratory system and that self-awareness and strength that's going to positively impact their singing. But also for an individual with CF it impacts their control over their disease."
The lessons also help people overcome a rare hardship. The isolation the disease creates.
"Two people with cystic fibrosis cannot be in the same space due to the risk of cross-contamination or cross-infection. Bugs that I harbor, someone with CF sitting next to me, it could be deadly for them."
Thanks to technology, Ashley found a way around that isolation.
"Our Singspire program first and foremost was these individual lessons, a person with CF anywhere in the world would be paired with an instructor across a video call."
"We have a person across the screen, a teacher and a student who have this great connection and relationship, but beside them, there are all these other individuals who have the same love, but having cystic fibrosis and not being able to be in the same room would forever prevent us from coming together and join our voices to become something greater. So to kind of stick it to CF, we decided to come up with a virtual choir."
A group of students who get these singing lessons does special online performances through the virtual choir.
While there is no cure for CF, Ashley found empowerment through singing and its power she's helping to put back in other's hands.
"Just because you have cystic fibrosis, doesn't mean you can't be a singer or that you can't be whatever you want to be. It is how you do it and the passion you put behind it."
If you would like to see more of the virtual choir's latest project, visit their
page for the entire project.