Living and Fighting Cystic Fibrosis

As told to Catherine Patwell

Dayna Blackmon of Kingston is a regular 9-year-old girl. She loves to play sports, drawing, and dance troop. The only thing that's different about her is she does it all while living with Cystic Fibrosis.

My friend Aeinya once said that she wished she could understand what my life is like. Actually, lots of kids ask me what it’s like to have cystic fibrosis, and how I get through the challenges. My life is different from my friends and other kids without CF. For example, I have to wake up extra early in the morning to do my treatments, which sometimes makes me late to school. I have to wear a vest to help me breath better, and every day at school I go to the nurse’s office to take enzymes before I can eat lunch. I go for checkups a lot, and since my doctor is not in my town, I have to miss school.

I love to play sports, like basketball, softball, and dance. But when I do, I have to make sure to take lots of breaks, drink extra Gatorade, and eat salty things because I sweat more than other kids and get tired more easily due to CF. Last year, I missed my track meet because I was in the hospital.

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It’s hard being different, and I wish I had someone else like me to talk to. I’m the only person in my school with cystic fibrosis, and a lot of my friends don’t understand what it’s like. I’m so thankful that I have such an awesome mom and dad who help me explain the whole thing. My dad sometimes comes to my school to show—and explain—my nebulizers and the other things we use in my everyday treatments. Now that my friends and neighbors understand what my life is like with cystic fibrosis, they are so supportive. Aeinya even explained the whole thing to her family, and they all got together to donate for a cure.
    

    
Actually, there are a lot of ways kids can help the fight against cystic fibrosis, or for any other issue they care about. The best things anybody can do are donate money and do their best to help people understand the disease. Because of my family’s efforts to raise awareness about the disease, my elementary school community has supported me with school-wide fundraisers every year since I was in second grade. Last year we raised more than $800 for the Cystic Fibrosis Foundation’s research. By spreading knowledge, we have a better chance at finding a cure together.

I believe that anybody who donates to the fight against CF is my friend, even the people who I don’t know and have never met, just because they’re helping me and everyone else who has cystic fibrosis. I want to invite everyone to be a part of my team, “Dayna’s Dream Team,” at the Great Strides Walk to benefit the Cystic Fibrosis Foundation in Poughkeepsie on June 12. You can walk with us, talk with us, and learn all about cystic fibrosis.

The day of the walk feels a lot like a party. All my friends walk for my team, and even my dance troupe performs. Last year my friend Charlie came from very far away, and it touched me that he drove so far to see me and support me. My family and I have walked every year since I was 2 months old. My birthday is March 31, and this year I turn 10, which makes this our 11th walk. And our team keeps getting bigger and bigger every year.

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I can’t keep count of all the people who walk on my team. We now have teams all over the country, including Florida, South Carolina, Ohio, New Jersey, and Kentucky. I love that there are people all over who support me just by wearing shirts that say “Dayna Dream Team.” So if you can’t come to Poughkeepsie, please join one of these walks that take place all around the country. 

The Great Strides Walk is in the spring every year, but we work year-round to fundraise for the cure—for me and for everyone else with cystic fibrosis. My parents travel to places such as Washington, D.C., for the Volunteer Leadership Conference, where parents of CF kids get together and learn how to fundraise and build teams, and spend time supporting each other. My dad also goes to Albany to advocate with the state legislature for additional funding and for programs for people with cystic fibrosis in New York. It’s a whole family issue, not just mine personally.

I make charm bracelets and I sell them to help fund CF research. I donate all the money I earn to the Cystic Fibrosis Foundation for research. Last year I raised a couple hundred dollars, all from selling my bracelets.

I’m in fourth grade now, and my favorite subject is science, because I want to be a scientist when I grow up. My mom calls me her Little Warrior because it takes a lot of strength to keep fighting. But it’s what I love to do. When I grow up and become a scientist I’m going to do all I can to research a cure for cystic fibrosis. And I won’t stop until I do!

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