Nine-year-old Akeelah was diagnosed at birth with sickle cell disease. She experienced her first pain crisis at just six months old when she spent a week in the hospital for a blockage that caused swelling and pain in her leg. In the next two-and-a-half years, Akeelah experienced eight more pain crises caused by her sickle cell disease. Her diagnosis often left her feeling different than her peers, especially because from the outside, it was hard to see the pain Akeelah was experiencing. “It’s hard to tell other people about sickle cell disease, and most people don’t know I have it,” Akeelah said. “Children with sickle cell disease often struggle with pain and fatigue pretty regularly,” said Akeelah’s mom, Lisa, “but they also like to be just like regular kids—play and learn and navigate life.”
As Akeelah learned to navigate her life with sickle cell disease, her pathway led her to the University of Rhode Island volleyball team. Akeelah was matched with the Rams in October of 2022. At first, Akeelah wasn’t sure how she felt about the sport of volleyball; but her connection to the team clicked immediately. In the time since, Akeelah has loved going to practices, matches, scrimmages, and events with her teammates off campus. “I really liked when we carved and decorated pumpkins as a team!” Akeelah said. “I also really liked when they came to see me in the Lion King!”
As a mom, Lisa has also loved seeing the ways her daughter has grown with the team, both on and off the court. “I loved seeing her as a ball girl and as part of the scrimmage huddle where she is treated as part of the team,” Lisa said. “We had so much fun at the team pumpkin carving, and Akeelah was so thrilled when much of the team came to her youth theatre show of the Lion King.”
Being part of the URI volleyball team has given Akeelah a new appreciation of volleyball. More importantly, it has given her an opportunity to put her sickle cell disease on the back burner and let her sweet, caring, and kind personality shine through and be embraced by her teammates. “Team IMPACT gives kids who have lifelong conditions like sickle cell disease a chance to feel special and included and encouraged despite their illness,” Lisa said. For Akeelah, it’s much simpler than that. “My team makes me happy, and I like doing things with them.”
As we continue honoring Sickle Cell Awareness Month and celebrating the matches in our program living with sickle cell, we also celebrate our partnership with Vertex Pharmaceuticals, who works every day to develop medicines and conduct research to help treat sickle cell disease. Together, Team IMPACT and Vertex Pharmaceuticals are committed to getting all kids living with sickle cell disease in the game.