31 Days of CF: Singing for Joy – and Cystic Fibrosis Awareness

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by BNS Staff |

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Photo courtesy of Sicily Russo

Day 30 of 31

This is Sicily Russo’s story:

My name is Sicily Russo, I’m 15, and I was diagnosed with cystic fibrosis (CF) when I was 9 months old. Since I was little, I knew my life was much different from that of others around me. I’ve had to grow up faster than other kids because life with CF — and countless hours of treatments, medications, and clinic visits — is not an easy battle to fight.

While it can be lonely, overwhelming, scary, there was always one thing I could count on to be my outlet. That thing is music, and it sparks so much joy in me and motivates me to persevere through the rough patches.

Growing up, my parents encouraged my creativity, especially my dad, a musician himself. When I was about 9, we decided to take two of the biggest parts of my life — cystic fibrosis and music — and try to make an impact on both.

My dad and I started writing songs together about my experience living with this disease. In the songs, we wanted to spread a message about CF that would bring awareness to the day-to-day reality.

We played shows together to get my name out there and then took the next step and recorded some of our songs. We released them one by one, and were thrilled by the support we received. Friends, family, community members, and people from all over the United States were listening to my songs! We’ve raised around $40,000 by selling my music, playing shows, and doing fundraisers. It’s been an amazing journey and it’s taught me so much about myself and my disease.

An important thing I always have to remember is that CF doesn’t define me. It’s made me stronger and a better person by always challenging me. But with passion, determination, and support, I can rise above my limitations. Music has saved me in many ways. Not only does it improve my lung function by acting as a “workout” for my lungs, but it’s also shown me the selflessness of the people who love me — and how even a small person can make a big difference.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or read the full series.