In 2011, Bel Air, Maryland, residents Bethany and Damon were thrilled to bring their newborn daughter, Juliet, home. Later that same day, they were shocked to receive a call with the news that Juliet had sickle cell anemia, a hereditary red blood cell disorder in which some blood cells are shaped like crescent moons, leaving a shortage of healthy red blood cells in the body and causing episodes of pain in the chest, abdomen, joints and bones.
“I was devastated because I honestly couldn’t process that this was really happening,” Bethany says. “We saw our pediatrician, who said there is going to be nothing better than the care you are going to get from Johns Hopkins Children’s Center for Juliet.”
As an infant, under the care of a pediatric hematologist at the Children’s Center, Juliet started a daily medication that helps prevent blood cells from clumping together, hopefully decreasing the likelihood of a pain crisis or even a stroke. Because Juliet’s condition makes her more prone to infections, she also started taking daily antibiotics and learned how to keep her body warm in an effort to minimize the chance of her blood clumping together and causing a sickle cell crisis.
When she was 5 years old, in 2017, Juliet had a high fever and developed pneumonia and acute chest syndrome, resulting in her longest hospitalization at the Children’s Center. She needed a blood transfusion to supply her body with enough healthy red blood cells to fight the infection. Within hours of the transfusion, Bethany recalls, Juliet become more like her normal self and, after five days in the hospital, they returned home.
Juliet remained healthy and did not have more hospitalizations until early this year, when she again developed pneumonia and acute chest syndrome. She spent two days as an inpatient at the Children’s Center — thankfully, this episode didn’t require a blood transfusion, and Juliet responded positively after a course of antibiotics.
Inspired to help other kids like her, Juliet and her family started an Etsy shop where they sell custom earrings, donating some of the proceeds to sickle cell research.
Juliet is now under the care of pediatric hematologist Emily Rao, M.D., M.A., M.S., at the Children’s Center, and she receives monthly blood draws and annual brain scans to monitor possible health concerns. Her parents are hopeful that a cure will become available to Juliet as she grows. In the meantime, the 11-year-old “is absolutely living the life she is meant to have,” Bethany says. “She is strong and resilient, and her illness doesn’t define her.”