My mother woke me up at 8 a.m. I headed to the bathroom to shower. Looking at my arm, I could see the bruises and marks from the countless needles that had pierced my weak skin in the past month. After my shower, I put on the clothes laid out for me, including a heavy jacket to protect me from the cold. Walking the short distance to the car was a strain; every breath of cold air I took was painful.

When we arrived, the waiting area was empty. I sat in the seat farthest to the back and watched the door, waiting, until the nurse poked her head out and said, “Fatmata? The doctor is ready to see you.”

Climbing up on the uncomfortable examination table, I made eye contact with my mother. She gave me a smile; she always has hope.

My doctor walked in and greeted us warmly, making a joke about how I was getting so big. He asked me to take deep breaths as he placed the cold stethoscope on my back. Then he turned to my mother and said, “I think Fatmata has pneumonia. You should take her to the emergency room so they can start treatment immediately.”

His words cut through me. The idea of having to be subjected to needles, therapy sessions, waking up every hour of the night, missing a whole month of school, and so much more sickened me. I started crying. We drove to the hospital, and that began my next month of hell.

I’ve always known I was sick, but I was never prepared for the side effects. I was born with sickle-cell disease, a genetic blood disorder that means my red blood cells are crescent-shaped instead of round. Due to their shape, my blood cells can’t flow through my veins normally, which causes excruciating pain and can amplify any illness. Because it was winter at the time, having pneumonia was an added insult, since cold weather alone is the biggest pain trigger for someone with sickle-cell disease.

I remember one night in particular during the second month of treatment. My mother was exhausted, sitting in the cold, hard hospital chair next to my bed. Looking at her, I felt useless. I couldn’t do anything to help myself or relieve her distress.

The doctor came in and sat on the edge of my bed. He looked at me sympathetically, a look that was all too familiar.

“Fatmata is in a special position,” he began. “We obviously want what’s best for her. I suggest you look into homeschooling so she can focus on pain management instead of stressing about keeping up at school.”

My mother quickly replied that she couldn’t believe he would even suggest that. When he realized he had offended her, he changed the subject to treatment options.

“Do you plan to keep her on the antibiotic?” my mother asked.

“The pneumonia is spreading to the other side of her chest,” he replied, “so the best thing to do is try a stronger medicine.”

My mother agreed, and they began the treatment. Although the strong medicine, intended for adults, burned my veins every day for days, it worked. I got to go home, finally.

I went back to school and continued to try to get the good grades that made me feel accomplished and my mother proud. I did everything to prevent me from standing out from my fellow sixth graders. Most days I’d act cheerful, but occasionally I’d be in pain, which was noticeable to my peers because it was a drastic personality change. They began to poke fun at what appeared to them as a cry for attention.

Although the pneumonia was cured, I hadn’t anticipated the effects I would experience after my illness. A week after I left the hospital, we had a big family dinner at my grandparents’ house. I ate a decent-sized meal, and we went home. Around midnight, I woke up with the worst pain of my life. My stomach felt as if it was a black hole, pulling my skin and bones into its never-ending pit.

“It’s okay. It’ll go away soon. Don’t cry,” said my mother, trying to calm me.

I could barely hear her over my screams. Finally, around 4 a.m., I fell asleep. My doctor concluded that the medicine had made my stomach weak. He put me on a diet of chicken broth, saltine crackers, Gatorade, and Jello. Not much of a feast. Although the situation improved, I still had many painful, sleepless nights. But I never stayed home from school, because that would be quitting. I don’t quit.

Recently I went to John Hopkins in Baltimore and saw my hematologist. But this time I wasn’t sick. I was going for testing, not just for myself but for others. The doctors had observed how I was excelling academically and health-wise, and came to the conclusion that I was doing something that could help others in situations where there seems to be no answer. The research performed on me helped other people who are suffering. I felt like I was changing the world.

When I used to have episodes of pain I would yell and scream and sob about the fact that I had to go through this and nobody else I knew did. Although this may sounds strange, if I hadn’t been born with sickle-cell disease I feel I wouldn’t be where I am today, socially, academically, and even spiritually. The fact that I can’t get rid of my disease motivates me to overcome it.