AT HIS FAMILY’S RANCH-STYLE home in suburban Atlanta, 8-year-old Seye Arise bounds onto a makeshift basketball court in the driveway. “C’mon!” yells the second grader, hailing his kid brother Bowo, 3. “Let’s play!” Seye heaves the ball toward the hoop several feet above his head. Air ball. But he doesn’t really care. Flashing a huge smile, he snares the rebound and dribbles circles around Bowo as the two squeal with laughter.
It is a familiar gleeful scene, yet one that doctors had feared Seye might never know. Seye is one of about 80,000 people in the U.S.—the majority of them African-American—born with sickle-cell anemia. The disease takes its name from the abnormal, crescent-shaped red blood cells that gather in clumps, preventing oxygen from circulating freely through the bloodstream. The condition, which is genetic, can be benign. But in some it causes recurrent swelling and excruciating pain. At its worst, it is deadly.
Although Seye was tested at birth and shown to have sickle-cell anemia, his symptoms did not appear until he was 1. His hands and feet puffed up, and he was crippled by pain. “He started crying and crying, and he wouldn’t stop,” says his mother, Bisi, 35, a native of Nigeria who moved to the U.S. in 1986 with her husband, Ayo, 40, an exporter of computers. When Seye developed a limp at age 4, medical tests revealed he had suffered a sickle-cell-induced stroke. His doctors predicted Seye would suffer another within a year and might not survive past his 20s. But Bisi, a registered nurse, refused to give up hope: “I just kept praying that something can be done.”
That something arrived in 1993, when Seye was one of 22 patients nationwide chosen for a bone-marrow transplant study—a risky procedure used in the treatment of leukemia. By replacing his marrow, which produces red blood cells, with the marrow of a donor, researchers hoped his body would produce normal cells. The results were astounding. According to a report published last summer in the New England Journal of Medicine, 16 of the 22 patients are now free of the disease. Roger Vega, Seye’s doctor at AFLAC Cancer Center, Egleston Children’s Hospital in Atlanta, says Seye “can live a normal life for a young kid.”
Seye’s parents were aware long before his birth of the threat of sicklecell—they both carried the gene. That meant their children faced a one-in-four chance of developing the illness. Their first son, Moyo, 10, was born free of the disease, but Seye was not. “You do not know when the pain is going to come, then suddenly you have it,” says Bisi. “For a year he was fine.” Then his feet swelled, and the symptoms spread. He was given transfusions every three months to reduce the damaged cells in his system, but at times the pain and life-threatening infections grew so severe that the Tylenol and penicillin he ate like candy did nothing. He pleaded for relief, recalls Bisi: “He would have so much pain, he would say, ‘Mommy, can you cut this leg off?’ ”
The marrow transplant offered hope, but there were hurdles. Fortunately, medical insurance picked up the $100,000-plus cost. Beyond that, doctors had to find a donor with a perfect bone-marrow match. Luckily, both of Seye’s brothers matched. Doctors chose Moyo because Bowo, who is also free of sickle-cell disease, was so young. “He was excited because he could do something for his brother,” Bisi says. Although 20 percent of bone-marrow-transplant patients die from complications, Bisi felt there was little choice: “The possibility of another. stroke was very real. This was something that could be a cure.”
On Nov. 29, 1993, Seye began chemotherapy to kill his own bone marrow. Ten days later, healthy marrow from Moyo’s hip bone was transplanted into Seye. Despite early signs of success, Seye suffered a serious setback shortly after the procedure—his liver showed damage. Bisi and Ayo kept vigil by Seye’s hospital bed, constantly eyeing his charts. “We almost became like doctors ourselves,” says Ayo.
Fortunately, Seye’s condition improved, and he was discharged from the hospital Jan. 14. Within two months he seemed healthy. “He started to do everything he didn’t do before, like running around, jumping,” says a joyous Bisi. “I was like, ‘Is it really him?’ ”
Seye, with his megawatt smile, now dreams one day of being a movie star. Yet he doesn’t take his cure for granted. “I wish all the other kids who have sickle-cell could get this,” he told his mother after his transplant, “so they could all be happy like me.”
CINDY DAMPIER in Atlanta