Hello, my name is Nolan Hess. I’m almost 4 years old, and I have Cystic Fibrosis.

My family has been walking in Great Strides since May 2022, right after I was diagnosed at birth with CF. Since then, I’ve taken life-saving medicine called enzymes to help me digest food because I was born with a pancreas that doesn’t work well — something that happens to a lot of kids with CF. Gaining weight has been my biggest challenge. I get hungry and eat, but my body works extra hard and burns lots of energy, so it’s tough to keep weight on.

When I turned 2, I was able to start a miracle medicine called Trikafta. It helps treat the cause of CF, and it’s helped my body in many ways, but I still work hard every day to grow big and strong.

CF is mostly known as a lung disease. I’ve been very lucky not to have been in the hospital for serious lung problems like some of my CF friends. To keep my lungs healthy and clear of mucus, I wear a special vest two times a day for 20 minutes. It shakes my chest to help keep my lungs clean, and I use inhalers or a nebulizer to help open my airways. I also take vitamins and other medicines to stay strong.

Even though I do all of that, I’m still just a normal kid! I love playing outside on my playground when it’s nice, and in the winter I love my “kid gym” in the basement. I love playing with my big brother, my cousins, and my neighbors. I love doing crafts, and Halloween is my favorite holiday ever — I even like singing Halloween songs and watching Halloween videos during my vest time. I also love Paw Patrol and If You Give a Mouse a Cookie.

I go to school, and sometimes I have to miss days in the winter because of germs, but for now we take things slow. I’m starting to notice that I have to do some things differently than other kids. They don’t have to stop and do vest treatments, or take medicine every time they eat, or take lots of yucky vitamins like I do. I know I have CF, but I don’t really understand why it’s just me. My family says I’ll learn more about it as I grow.

Sometimes I feel sad when I have to stop playing to do treatments or pause my dinner for medicine. But most of the time I do a great job because my mom says I’m very brave.

I feel so lucky that so many people walk with me every year. I might not fully understand that it’s all for me and other people with CF, but I do know it’s one of my favorite days of the year!

Please consider supporting my journey by donating or walking with my team, Nolan Patrol, at Great Strides. Your support helps kids like me live healthier, longer lives and brings us closer to a cure.

Love,
Nolan 💙