Shaun Daniel Jackson is a 10 year old boy who has lived his whole life in Ipswich, Massachusetts. On the outside he may look like a normal kid who loves to ride his bike and play with his friends but on the inside he has to live with CF.

Cystic Fibrosis, also known as CF, is an inherited life-threatening disorder that damages the lungs and digestive system. Cystic fibrosis affects the cells that produce mucus, sweat, and digestive juices, causing them to become thick and sticky. They then plug up tubes, ducts, and passageways. Symptoms vary and can include cough, repeated lung infections, inability to gain weight, and fatty stools. There is no known cure since it is a genetic disease. Shaun has to take multiple different enzymes and medicines every day to help him combat his symptoms and help his respiratory and digestive systems function well. He also has to do breathing treatments to help his lungs and breathing since there is mucus constantly forming in his lungs, and he may even one day need a transplant.

The only boy of 5 kids, Shawn has a twin sister Noelle Jackson and three older sisters, Brianna Jackson, Thea Alexson and Andria Alexson. Since he is my brother, I had the chance to interview him and a few family members. When I asked Shaun how he feels about having cystic fibrosis he responded, “I don’t like how it makes me different or that I have to do stuff other kids don’t have to.” It broke my heart to hear him say that about himself. He has always been very self-conscious about being different and oftentimes tries to avoid taking his meds in public places so that other kids don’t make fun of him. Shaun has always been very shy and has had a hard time making friends. He has also had a problem with bullies in the past.

I asked him what things he has to do that other kids don’t have to and he replied, “I have to take my enzymes and my orakambi and other stuff and go to the doctor a lot and stuff. And I have to do breathing treatments with my vest.” His vest treatment is one of his favorite things to do. It’s a vest that fills with air and pumps air in and out of his lungs. This makes his whole torso vibrate, so he likes to sing since it makes his voice sound funny. The purpose of the vest is to try and vibrate mucus loose from his lungs so he coughs it up later.

I then asked Shaun what he thinks CF is, and he said, “It’s something I have that makes my lungs and stuff different.” Since he is young, I think that is all he truly understands about it, although we have explained it to him before. I asked Shaun what his favorite activities are and he listed the same sorts of activities most 10 year-old boys like: “I really like basketball, soccer, football, Fortnite, and riding my bike with my friends.”

When I asked him how the pandemic has affected him differently from how it may have affected others he said, “Well, I can’t go into places like other people because it’s more dangerous for me because of my lungs, and I can’t see my friends anymore.” One of the things he started doing a lot more since the pandemic started was playing video games since it’s really the only way for him to interact with his friends. Life’s gotten harder in quarantine for our family, but we’re getting through it and as long as it keeps our brother safe, it’s okay.