Joshua Sobers-Henry

joshLast fall, sixteen-year-old Joshua Sobers-Henry was dividing his time between the demands of high school, cooking for his family, and training to be a goalie for the Barbados national soccer team. With such a rigorous schedule, it wasn’t a surprise that Josh began taking extra long naps after school. When he started having severe headaches, fatigue, and shortness of breath, he tried to hide his symptoms because he didn’t want anything to get in the way of the prospect of making the soccer team. But when the symptoms worsened and his tongue and fingertips turned white, his mother Carolann rushed him to the hospital.

After a series of blood tests, doctors told them that basically, he had no platelets or blood cells, but that they lacked the equipment in Barbados to determine the cause of his anemia. Doctors at Queen Elizabeth Hospital sent the blood cells to the US to be tested, and they soon received a diagnosis of severe aplastic anemia. Aplastic anemia is a rare blood disorder in which the body’s bone marrow doesn’t make enough new blood cells. Josh was admitted to the hospital in Barbados where he was given daily blood transfusions, which can help relieve the symptoms, but are not a permanent treatment. To have a chance at successfully overcoming the disease, Josh needed to have a stem-cell transplant.

In January of 2014, Josh and Carolann came to the National Institutes of Health for the lengthy transplant process at the National Heart, Lung, and Blood Institute (NHLBI). They kept in touch with Josh’s dad, Richard, and brother Ocean, 18, and sister Skye, 12, through Facebook and regular Skype sessions. Josh’s family has a cooking shop at home and they found a Caribbean market in downtown Washington so that they could make and share some of their favorite dishes with other families at The Inn. “The Cultural Family Night allowed me to keep a sense of normalcy as an aspiring chef—that’s something I’d do in Barbados,” says Josh.

Because Josh needed to stay near the NIH for several months after his transplant and their other family members were able to join them here, they transitioned to The Inn’s Woodmont House, which enabled them to have more independence, while still having the opportunity to participate in activities that were offered by The Inn. The family also took a week-long Caribbean cruise, sponsored by the Make-a-Wish Foundation, this summer. Josh was excited to have the opportunity to cook in the galley with the ship’s chef and receive an official chef’s hat and jacket

Josh and his mom feel that the doctors at the NIH left no questions unanswered. “I don’t have to worry. They’re helping me, but I’m helping someone else because of the research. It’s pretty cool,” says Josh.