Sickle Cell Camp '11
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Faces of Sickle Cell
Bone-marrow transplant gives girl normal life
An act of sisterly love cured Elizabeth Oriade.
The 10-year-old Mountlake Terrace girl is now healthy, her sister Abi's blood flowing smoothly through her veins.
Gone are the sharp, crescent-shaped cells that would jam up in the small vessels of her lungs and brain. Gone is her sickle cell disease.
Now she can swim and play soccer like any other kid. Because gone is the worry that those normal, everyday activities could lead to a trip to the emergency room.
More than 70,000 people in the United States have inherited blood disorder, and about 1,000 babies each year are born with it. When sickle cells block small blood vessels, they can cause pain, tissue damage, and - in Elizabeth's case - life-threatening complications.
Sickle cell is a global health problem that spread, in part, because people with sickle cell trait, or the gene for sickle cell but not the disease itself, had a survival advantage in malaria-plagued parts of the world.
Sickle cell disease affects not just people of African descent, but also Asians, Middle-Easterners, Hispanics and Europeans.
Elizabeth's parents, Caleb and Toyin Oriade, are American citizens who emigrated from Nigeria. Both have sickle cell trait. Elizabeth, who goes by "Tola" with family and friends, represents their one-in-four chance of conceiving a child with the disease.
"We were saddened. We know of people with sickle cell," said Toyin, who stayed home seven years to care for their middle daughter.
But she was never sick, Toyin said. Unlike many with the disease, she never suffered episodes of severe pain. Aside from some coughing and minor respiratory problems, she seemed well enough.
So well, in fact, that Toyin dusted off her career plans and started law school.
She was in her first week of classes when her daughter had her first serious bout with the disease.
What started out as a cold turned into acute chest syndrome, a potentially serious complication that occurs when sickle cells clump up in the small vessels of the lungs, making it difficult to breathe. She received a blood transfusion, antibiotics and was hospitalized for three days.
A year later, at the age of 8, Elizabeth had a stroke.
For two agonizing days, her parents waited to find out if she would likely bounce back or not. Doctors were hopeful. A brain scan revealed scars, indicating that she had already survived previous "mini strokes".
Even with full recovery, Elizabeth and her parents faced an uncertain future. Children with sickle cell who have one stroke run a much higher risk of having another. Plus, she would require several years to a lifetime of repeated blood transfusions.
The doctor, M.A. Bender of the Odessa Brown Children's Clinic, suggested the Oriades consider the only cure: a bone-marrow transplant.
"Our minds were made up. If it was possible we were going to go for it," Caleb said.
While bone marrow transplants can and do cure people of sickle cell, transplants aren't appropriate or possible for everyone with the disease, Bender said. Whether or not a person is a good candidate depends on the severity of their disease and the availability of a donor.
The Oriades were lucky in that regard. They didn't have to look any further than Elizabeth's older sister. Eleven-year-old Abi was a perfect match. Even between siblings, the chances of that happening are only one in four.
Still the transplant was not without risks. Doctors were up front with them, Toyin said. They could lose Elizabeth.
Though frightened, Abi agreed to be a donor. Before the transplant took place in May 2005, her only question of the doctors was, "Is my sister going to be okay?"
More than a year later, the two sisters are closer than ever, sharing not just blood, but interests as well, said their mother. After the transplant, Elizabeth mysteriously acquired her sister's love of playing piano.
The special bond between her two older sisters isn't lost on the youngest, 5-year-old Tayo: "She was cured by Abi," she says, simply.
Her sister's blood has given Elizabeth the luxury of living like everybody else, her mother says. This year, for the first time, she was able to take swimming lessons and play soccer. (She used to have to avoid both because cold temperatures and injuries can trigger pain crises.)
Now she's looking forward to a life that isn't compromised by sickle cell. She wants to be a chemist when she grows up: "I think chemistry and science are really, really interesting" she says.
Sister Abi's interests lie in the legal profession, just like her mother, who graduated from law school in May.
Toyin says her only ambition - besides taking the bar exam in February - is to see that her daughters grow up healthy and happy. "I'm fulfilled already."
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