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About 10% of people with cystic fibrosis are unresponsive to the new drug Trikafta that is successfully working on other patients’ symptoms; 13-year-old Sicily Russo of Wilson is one of the 10%.
“It’s not a cure, but it’s definitely helping people,” said Sicily’s father, Matty Russo, local musician and lead singer/guitarist for the group Matty Begs. “It’s great and we’re so happy for them, but Sicily can’t take it. But we’re doing this until there’s a cure.”
And by “this” he means raising money to help scientists find a cure for the disease.
Cystic fibrosis is a hereditary disease that affects the lungs and digestive system. Lack of a protein in the body that breaks up mucus in the lungs causes lungs to fill up with mucus. In some mutations of the CF gene, the pancreas is also affected. CF can be life-threatening and usually results in a shorter-than-normal life span. There are approximately 30,000 people in the U.S. with CF, and nearly 1,000 new cases are diagnosed each year.
“It’s unfortunate that I can’t take it (Trikafta), but it shows that they are getting closer to a cure,” Sicily Russo said. “And if we keep raising money, then hopefully they will find a cure or at least a medicine that we can all take.”
Like her father, Sicily Russo is a songwriter and singer. This Saturday, she will release her new song “Long Gone Memory” and its music video during a fundraiser at 217 Brew Works from 7 to 10 p.m.
The event is free, but there will be several ways to donate to the Cystic Fibrosis Foundation. Items and gift cards will be raffled off and include a yoga garden party for 10 from The Leaning Tree, merchandise from the Wilson Tobs, a basket of hair products from Tousled Salon, Subs Plus gift certificates and a free three-month membership to the YMCA with YMCA merchandise. T-shirts and stickers will also be available for purchase, and donations will be accepted.
Also, 217 BrewWorks will donate 10 percent of its sales during the event to the cause, and 100 percent of all “Long Gone Memory” song downloads will be donated.
“What we do is roll all the proceeds into the Rocky Mount Mills 5K benefiting cystic fibrosis on May 9 in Rocky Mount for CF month, which is May,” Matty Russo said. “We take all the money we make during the year and donate it at this race.”
WRITING WHAT SHE KNOWS
Sicily Russo’s songs are more often than not about living with cystic fibrosis, but not everyone would know that.
“‘Long Gone Memory’ is a song about trying to make my disease a long gone memory,” Sicily Russo said. “I’m trying to put it in the past and overcome it. We always talk about how we hope that someday there is going to be a cure for CF, and I guess the idea just kind of came to us. I like it because people can have their own interpretations of it (the lyrics) and it’s not directly saying, ‘This is about cystic fibrosis.’ To me it is, but to other people it can mean something different.”
“I think we’ve written a lot of songs about CF, but anybody can relate to the lyrics,” Matty Russo said. “It’s like we personify CF, and we’re saying, for example, ‘You’re breaking up with a boyfriend,’ but it’s really telling cystic fibrosis to take its stuff and move on.”
Sicily has been singing since she was 2 years old, having the talent and the personality for it, her father said.
“People with CF have problems breathing and singing, so one of the things we want to do with this concert and fundraiser is say, ‘Hey, this girl with CF is getting up there and singing and overcoming all the things she has to do,’” Matty Russo said.
DIAGNOsIS AND TREATMENT
Sicily was 9 months old when she was diagnosed with cystic fibrosis, specifically with gene mutation P67L, the one found in only 10% of CF patients. The gene traces back to families with European roots. Both Matty Russo and wife Mary are of Italian decent and discovered after Sicily was born that both are CF gene carriers, meaning they had a 25% chance of having a child with CF.
Before she was big enough to use a vest that provides high-frequency chest wall oscillation, Sicily’s father used to have to do “pat pats,” cupping his hand and hitting her back repetitively for 90 minutes each day, divided into two or three sessions.
Now, she gets up early every morning with her father and they watch Netflix while she completes a breathing treatment. She also wears the vest before school, at lunch if she is home from school and then again at night. This adds up to two or three hours every day of breathing medicines and wearing the vest.
“When your kid has cystic fibrosis, it’s like the whole family has the disease,” said Sicily Russo, who has 11-yr-old twin sisters, Ani and Enza. “But I always say that stuff could always be worse. I’m so lucky that my family is so great, and we have all these medicines now. I guess it was meant for me to have CF and you have to work around it because people often have it a lot worse than you and you have to realize that. You have to put things in perspective.”
“Sicily is so positive, and I tell her that it helps,” Matty Russo said. “The body feels the way that you feel and I think she overcomes a lot of the stuff just because of her positivity.”
Plan to Go?
“Sicily’s Release Party” for “Long Gone Memory” and cystic fibrosis fundraiser 7 to 10 p.m. on Saturday at 217 Brew Works, 217 South St. S.