Wearing white jeans and a navy shirt bejeweled with glittering stars, 15-year-old Paizley Carwell-Bowen lounges in the living room of her family’s North Hollywood apartment. She seems like a typical bubbly teenager —she chats and giggles with a girlfriend, she dreams of being a pop star—but she has a troubled past. “Sometimes I’d see the devil,” she says.
Paizley’s disturbing visions started after she had a stroke at age 6. The stroke was just one complication of sickle-cell anemia, the hereditary disease that has haunted her since infancy. Most common among people of African descent, the disorder causes oxygen-carrying red blood cells, which are normally flexible and round, to become rigid and take on a crescent (or sickle) shape. Sickle cells have trouble squeezing through fine blood vessels to deliver oxygen to the body’s tissues and organs. Instead they clump and choke off blood flow, causing intense pain as bits of lung, bone, brain, and kidney succumb to a lack of oxygen. Those with the disease die slowly, over years.
Paizley was so sick that doctors told her parents she might not live to be 18. Her early stroke left her left leg partially paralyzed. The pain would upend her days and nights. Her hip joints began to erode. She missed so much school due to hospitalizations that by age 11 she had been held back two grades. Then things got even worse. Her doctors tried to prevent another stroke by giving her blood transfusions every three weeks to dilute her sickle cells with normal red blood cells. The scheme worked for a number of years, but Paizley’s immune system learned to identify proteins on the transfused blood cells and began to attack them. Her own body was working at full speed to destroy the blood that was intended to save her life.
After a while it was virtually impossible to find blood for transfusion that could slip past Paizley’s ever-alert immune system. The prognosis was grim. “We were running out of options,” says Hisham Abdel-Azim, one of her doctors at Children’s Hospital of Los Angeles. He and his colleagues ultimately told Paizley and her parents that there was only one hope left: a risky stem cell transplant. Using powerful chemotherapy drugs, they would wipe out the bone marrow that produced the faulty sickle cells. Then they would transfuse donor bone marrow rich in the highly prized stem cells that are capable of generating new, normal blood. The family took the gamble.
Now, almost four years later, it is hard to imagine that Paizley is the same person. And in a critical way, she isn’t. Although she was born with sickle-cell genes, she no longer has sickle-cell disease. The healthy blood that flows through her veins is not her own; it is that of a 45-year-old woman who donated her marrow. Her body was rebuilt with that stranger’s stem cells, and Paizley now sleeps at night pain-free. She does not need blood transfusions. She no longer worries about having another stroke or dying young. She attends school uninterrupted. The devil is at bay.