5 Tips for Raising a Child with Sickle Cell: A Parent’s Guide
Don Magezi and his sister, both living with sickle cell disease, draw strength from one another. Their lived experiences inspire Magezi's message to parents.
When I was a child, I tried to hide my pain.
I wanted to keep up with friends, to play and compete in sports like everyone else. But sickle cell disease (SCD) has a way of reminding you it’s there. Episodes of pain, called pain crises, are a common symptom of SCD.
I remember one sports day at school when we were in a competition. I started strong, but halfway through, my legs gave out. I heard classmates whisper, “He’s lazy.” I wasn’t lazy. I was hurting. What saved me that day was my coach. He came to me, knelt down, and said: “You did great. Your body just needs rest.”
His words taught me something important: I wasn’t broken. I was human.
That memory has stayed with me. Now, as an adult with SCD, I want to share what I believe is most critical for parents raising children and teens:
1. Believe what you can’t see
Fatigue, pain, or sadness are not always visible. When your child says, “I’m tired” or “I don’t feel well,” take it seriously. Do not dismiss it as laziness or moodiness. Listening builds trust.
My sister also has SCD. She has mastered the art of suffering in silence. She is capable of being at an 8 out of 10 on the pain scale with a completely straight face. As a result, doctors often dismiss her complaints and requests for stronger medicines.
The words "addiction" and "psychological trauma" are often brought up by our nurses and doctors. But I'm my sister’s complete opposite. My face will betray me whenever I experience any emotion.
2. Create emotional safety
Children with SCD often carry guilt. They worry about letting people down. They might hide pain so that they won’t seem like a burden. Let your child know: “You are safe with me. You don’t have to be strong all the time. “
A good question to ask is: “How can I support you today?” instead of “Are you OK?”
3. Teach balance, not just endurance
Don Magezi (right) rides go-karts with members of his Warriors Club, a sickle cell disease support group in Uganda.
Growing up, I thought resting meant weakness. Now I know it means survival.
Teach your child to pace themselves. Celebrate their boundaries, not just their achievements. This is something I still struggle with today as a whole grown-ass adult.
Encourage quiet hobbies as well as active ones. Let your children find joy in both.
4. Be their advocate
Parents are the first line of defense. Talk to teachers and coaches. Share what SCD is, what warning signs to look out for, and what your child may need (like water breaks or time to rest).
Know about screenings and preventive care. For example, children with SCD should stay hydrated, have a balanced diet, and get plenty of rest. These steps save lives.
5. Build a community
SCD can feel isolating. Families sometimes keep it quiet. But isolation can breed shame.
Seek out other parents, patient groups, or online communities for support. Your child should know they are not alone. And neither are you.
If I could go back and talk to my younger self, I’d say: “You are not too much. You deserve love, patience, and understanding.”
