Jamari was born weighing just 2 pounds, 6 ounces, and had to spend the first three months of his life in the NICU. It wasn't until a week before he was discharged that his mother, Michayla, learned he had sickle cell disease. “I have the sickle cell trait, but I didn’t even know that until I was pregnant with him,” Michayla said. “I was completely unprepared. When they confirmed Jamari had sickle cell disease, I was in shock.” Jamari's fragile start to life made his diagnosis even harder for Michayla to process. He had already undergone multiple surgeries, and on top of his medical needs, Michayla needed to quickly learn how to manage the challenges of sickle cell disease. "It was overwhelming," she said. “I didn’t know how I would recognize if he was in pain, especially when he was so little. I felt lost. But I had to educate myself quickly. I had family members who had it, and I lost my cousin and her daughter to sickle cell disease." Managing Jamari's diagnosis means navigating ...