If children do not possess the language to describe it, how do they understand and communicate their pain?

Before my niece Sakaiyah came into my life, I had never known anyone with sickle cell disease. 

Initially it may have been nothing more than emotional avoidance, but I became focused on educating myself. I had access to academic journals and I could research what was happening to her. I would get informed, I would become an advocate, and I would learn how I could support her.

 I realized, however, that my academic inquiry ignored the specificity of Sakaiyah’s suffering. Unlike the meticulously worded, peer reviewed articles, she could not conceptualize the disease, nor did she have the verbal language with which to describe her experience. I became curious about what she understood of her illness and about how she made sense of her pain, so I began asking questions. Her responses were extraordinary and astounding. They are the reason for this film.

I am not a medical professional, nor am I an expert. I am a filmmaker who has spent years trying to understand sickle cell anemia and what it means to one child. To Sakaiyah. My Cells are Red Bananas is that story, and the information here is what I have found in the process. 

red crayon