61% of Sickle Cell Deaths Are Children Under 5
This 4-Year-Old Should Be Starting School. Instead, She's Gone—Along With 10,970 Other Children.
Let's call her Jessica. Her parents had already bought her tiny backpack and picked out her favorite pink lunch box, preparing her for school next week. But she died. Before her fifth birthday. She died from sickle cell disease—a condition most people think just causes "painful episodes." (And oh how piercingly painful those episodes are! For everyoe around her.)
The numbers from 2021:
- 33,909 people died from sickle cell disease globally
- 10,971 of them were children under 5
- 524,217 babies were born with the condition
- For every 10 sickle cell deaths, 6 are children who never see their fifth birthday
Think about that for a moment. While we've made incredible strides saving children from other diseases, sickle cell continues to claim babies at rates that would trigger global emergency responses if they occurred from any other cause.
Why should you care more today - World Sickle Cell Day? Because this isn't happening in some distant corner of the world to "other people's children." Sickle cell affects families across Africa, the Middle East, Mediterranean regions, and millions in the diaspora worldwide.
Many of these deaths are completely preventable. Countries with universal newborn screening catch the disease early. Families with access to genetic counseling make informed decisions. Children with proper medical care live full, productive lives. But too many Jessicas fall through the cracks of inadequate healthcare systems and public ignorance.
What you can do:
✅ Get genetic testing if you're planning a family—carrier screening saves lives before they begin
✅ Support newborn screening programs in your community—early detection changes everything
✅ Donate to sickle cell research organizations—breakthrough treatments need funding to reach patients
✅ Share this story—awareness is the first step toward change. Let's help stop the stigma, silence and suffering.
✅ Advocate for healthcare equity—no child should die from a manageable genetic condition
Jessica's story doesn't have to be repeated 10,970 times next year. We have the tools. We have the knowledge. We just need the will and heart to use them.