‘All I ever wanted was to breathe’

Thirteen-year-old Fatou is a dedicated eighth-grade student in New York City. Diagnosed with asthma and chronic lung disease, Fatou received a lung transplant in April of 2017 at Boston Children’s Hospital. By sharing her story, Fatou hopes to help readers better understand hidden disabilities and persevere through difficulty.

I’ve had asthma and chronic lung disease since I was very young. I had to use everything — from my head to my toes — to help me breathe. I remember being able to hear myself wheezing, to feel my lungs rattling. I had marks all over my face from my oxygen mask. I thought I would never be clear of mucus and never be able to walk without being out of breath.

All I ever wanted was to breathe.

I spent so much energy trying to breathe that I didn’t have much left for eating, so I was really skinny. I spent a lot of time in a wheelchair. When I was able to walk, it would be for short distances and my shoulders would slouch downward. People would stare and point at me. I wanted to tell them, “It’s not my fault! I’m sick.” It was so frustrating.

It was helpful to keep a journal with quotes that inspire me, like, “The tongue has no bones, but it’s strong enough to break a heart.” Once you say something, you can’t take it back, so if you see someone with a disability, be nice or just don’t say anything.

My friends at school were also nice and supportive. They would ask questions and I would try to explain. If they didn’t understand, I’d give them a list of words — COPD, hypoxia, bronchiectasis —to look up.

I’ve always loved school, probably because I know what it’s like to be too sick to go. Whenever I had to miss school, I’d do worksheets at home and email them to my teacher. One day, it was really snowy, and I was stumbling on the snow, but I thought to myself, I will get to that bus stop. When I finally got to school, only 10 people showed up, and everyone was on their phones, not doing anything. I couldn’t believe it! I was so bored, I started doing math problems.

My situation got worse and worse, and I finally had to be listed for a lung transplant. My social worker paired me up with a lung transplant recipient named Bobby Donovan. We emailed a lot and he told me everything to expect at every step, so I was never surprised. I want to do the same for someone when it’s their turn for a transplant.

There was so much waiting and waiting, I thought, “I can’t take this!” Luckily, it was only three months before we got the call. I was praying the lungs they found were the right size and blood type, and they were! I was excited and anxious.

Dr. Fynn-Thompson did my surgery. It lasted 11 hours, from 8 p.m. until 7 a.m. I remember waking up drowsy and with blurry vision. I heard the nurses trying to talk to me, and I felt them take out the four tubes in my chest. It wasn’t long before I was talking, talking, talking… the nurses thought I was crazy!

The first day I came back to school, I wasn’t in a wheelchair — my friends were so happy. They knew I had a transplant, and they were all amazed. We were celebrating.

It feels AWESOME to be free of the oxygen and the wheelchair. In September, my school called us to let us know they had a new wheelchair for me. It felt so good to tell them I didn’t need it.

Fatou and Dr. Gary Visner
Fatou and Dr. Gary Visner

Now, I come back to Boston every few weeks for checkups. It’s a long drive from New York, but my parents and my 9-year-old sister, Adama, come too, so it’s not bad. The only thing I don’t like is the bloodwork. I do physical therapy back in New York and I have braces for my ankles, which helps them get stronger now that I’m walking all the time.

Fatou crocheted scarves for herself and her sister, Adama.

Before I had my transplant, Adama would always get my medicines and whatever else I needed because I didn’t have the energy. She was such a good helper. Now, she says she has nothing to do! I always help her and her friends with their homework, since I went to the same elementary school and remember the curriculum. Adama says, “We have each other’s backs.”

I like how Mohammad Ali said, “Float like a butterfly, sting like a bee,” because I felt like I was floating before the transplant. Now, I can sting like a bee. I can take deep breaths now. At night, in bed, I just listen to my breathing as I fall asleep.

Learn more about the Lung Transplant Program.