Arlington fourth-grader Souad Barry likes to tell people that she has "special powers."
Although adults might chuckle at her comments, they would agree that the little girl is indeed special -- some might even use the word "miracle." One year after receiving a bone marrow transplant from her younger brother, Obie, Souad is free from sickle cell disease.
"I was praying and I was telling God if this works, I will praise him and invite all the people involved," said Souad's mother, Titi Barry.
Last month, more than 200 family and friends, some from as far away as Africa, gathered at Lomax AME Zion Church in Arlington to celebrate Souad's good fortune.
Sickle cell disease is an inherited blood disorder. The disease, which affects approximately 70,000 Americans -- primarily African Americans -- is an abnormality in the hemoglobin of red blood cells.
Red blood cells, which carry oxygen to the body's vital tissues, normally are round. In a sickle cell patient, they are sickle-shaped, making it difficult for oxygen to pass through. Complications range from fever, anemia and kidney damage to stroke. Many patients suffer crises in which blocked blood vessels cause severe pain throughout the entire body.
People who inherit only one sickle gene have sickle cell trait and can live healthy, symptom-free lives. Those who inherit two sickle cell genes have sickle cell disease.
Souad's father, Oumar Barry, 43, and mother, Titi, 42, both have sickle cell trait, as does Obie, 7.
Before her bone marrow transplant, Souad, whose name is Arabic for "luck," suffered many crises.
"The pain would wake me up," she said. "It was mostly in my stomach."
During those times, the family would rush to her side and try to ease the excruciating pain.
"They would rub my body and use a hot washcloth," Souad said.
"When Souad would have the crises, she would have this evil voice," said Oumar Barry, an airline worker from Cameroon. "Like 'The Exorcist!' " he said with a laugh.
The Barrys say Souad's health was at its worst in July 2002.
Souad's blood wasn't getting enough oxygen and she was having another painful crisis. Doctors at Children's Hospital in Washington had to give her three blood transfusions in three days. Eventually, they were able to stabilize her and send her home.
Titi Barry was aware of a procedure that might eradicate her daughter's pain. Her friend JoAnn Pearson Knox, then the coordinator for the Northern Virginia Sickle Cell Center, had told Barry about bone marrow transplants as a potential cure when Souad was diagnosed with the disease as an infant.
The family began researching the disease but didn't explore the possibility of a transplant until Souad's symptoms worsened two years ago. Doctors told the Barrys that Obie would be the best possible donor, but the family's medical insurance would not cover the procedure. Oumar Barry's salary at the airline and Titi's as a sonographer could not begin to cover the $400,000 procedure.
"I didn't understand," Titi Barry said. "Our insurance company didn't want to pay because they said it was experimental."
Titi Barry said she wrote dozens of letters to nonprofit organizations asking for help. "I received 10 responses," she said. "All of them said it was the end of the year and they didn't have funds."
Shortly after Souad's hospital stay, Titi was listening to a local radio station and heard the deejays urging listeners to sign up with a bone marrow donor registry. Barry said she called with the intention of becoming a donor, but after discussing her daughter's situation, she was eventually put in touch with doctors at the Children's Hospital and Research Center in Oakland, Calif.
The Barrys were told Souad's transplant could be done at no cost to the family, but she would have to stay in Oakland to prepare for the procedure.
So in January 2003, Titi, Obie, Souad and Titi's mother packed up and made the move to California, where they rented a small apartment. Oumar stayed behind to work.
It was a difficult time for the family.
"It was hard because we didn't know anybody there," Titi Barry said. "But I said if I had to sleep on the street, I will do it because we'd been through so much already."
While in Oakland, Souad underwent extensive chemotherapy to rid her body of its own bone marrow and make room for Obie's.
Souad had always protected her brother from bullies on the playground. "He's always playing basketball," Souad said. "One day, this boy wanted to take his ball and I pushed him away," she said.
Now it was Obie's turn to help his big sister. He didn't understand much about what was going to happen to him or his sister, but his mother and doctors in Oakland talked him through it.
"Obie had seen Souad have crises," Titi Barry said. "He asked me, 'If I give my blood, will Souad feel better?' "I said 'Yes.' Then he said, 'Okay, I'll do it!' "
Souad said Obie can sometimes be annoying -- like most little brothers -- but she is grateful for his gift to her.
Souad, a bright and energetic youngster, kept a journal of her time in Oakland. The first page features a picture of her and Obie embracing. The handwritten caption underneath reads: "This is my brother Obie. He knows how to spoil me. He is going to give some of his bone marrow to cure my sickle cell. He is my hero and I love him very much."
Doctors in Oakland said Souad did very well. "She was right on with my expectations," said Dr. Mark Walters, director of the blood and marrow transplant program at the center.
Walters said the success rate with this type of procedure is 85 percent when the recipient is a child and the donor is a sibling. Approximately 5 percent to 10 percent of cases end in fatalities, largely due to infection. In some cases, a recipient's body rejects the donor's bone marrow.
But in Souad's case, Walters said, Obie's bone marrow was a perfect match. Now that her body has accepted her brother's bone marrow, her blood carries the sickle cell trait, as does his, but she no longer has the disease. Her DNA, however, still reflects that of someone with sickle cell disease, and if she were to have children, she would pass that gene along to them. Souad's mother said her immune system "isn't yet 100 percent," which leaves her more susceptible to catching colds and flu, but Souad has already returned to school and is taking antibiotics. Her parents said doctors expect her immune system to be fully functional by the end of the year.
Walters said he doesn't understand why some insurance companies refuse to cover the procedure, because a bone marrow transplant is less expensive in the long run.
"It will cost them less in the life of a child," he said. "The average patient will cost six to seven thousand dollars a year on medication and hospital stays."
Pearson Knox of the Northern Virginia Sickle Cell Center said many people like the Barrys do not know they are carriers of the sickle cell trait until they have children. The center provides education for both children and parents affected by sickle cell disease, as well as schools.
"We would do a lot of health fairs, and I would run into 20-year-olds who had no idea if they were carriers," she said. "There are a lot of myths out there. We have to dispel the myth that this is a fatal disease. There is a lot that can be done."
Dr. Oswaldo Castro, director of the Howard University Center for Sickle Cell Disease, said his center spends a lot of time on education and counseling but is severely under-funded. The center provides counseling and comprehensive care but not bone marrow transplants.
"We have not really had major federal funding since the early '90s," he said. "That makes the operations much more difficult. The research is not as much as it could be."
The U.S. Senate recently passed the Sickle Cell Treatment Act of 2003, which will expand treatment for sickle cell patients and increase funds for education and research.
For Souad, life since her bone marrow transplant has been a lot easier. She hasn't suffered a crisis since returning from California. She is excited about signing up for gymnastics class. "I want to learn to do a cartwheel," she said.
On one recent rainy day, Souad munched on a granola bar and stared out the family's living room window.
"Dad, I have special powers," she said to her father as he lounged on the sofa. "If I tell the rain to stop, it will."
Ten minutes later, the storm passed.
For information about becoming a bone marrow donor, call the National Marrow Donor Program at 800-627-7692 or visit www.marrow.org.