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Lots of loving help from big sister
6-year-old girl undergoes bone marrow transplant
By Jill Coley
The Post and Courier
Monday, July 7, 2008
Amanda Williams, 6, who has sickle cell anemia and suffered a stroke when she was 4, is recovering from a bone marrow transplant at MUSC Children's Hospital. Her 15-year-old sister, Amber, was the donor. Amanda Vann (background) is one of Amanda's nurses.
Fifteen-year-old Amber Williams donated her healthy bone marrow to help her sister, Amanda.
Amanda Williams, 6, pushed an IV pole around her hospital bed to peek through the window of her sealed, pressurized room at the Medical University of South Carolina's Children's Hospital. Dressed in Cinderella pajamas, she ate My Little Pony candy and watched therapy dogs walk down the hall. Her risk of infection was too high for her to pet them.
Amanda was born with sickle cell anemia. At age 4, she suffered a stroke, collapsing at her mother's feet. Now, with the help of her 15-year-old sister, Amber, who does not have the blood disorder, the little girl might become symptom-free.
Healthy red blood cells are round and soft. But the cells of people who have sickle cell can become hard and pointed, clumping together and blocking blood flow.
Doctors at MUSC's Children's Hospital replaced Amanda's bone marrow, which is the body's blood cell factory located in the bones' core, with her sister's healthy marrow.
"It was scary," Amber said, rubbing her lower back, where rich, red fluid was harvested. "It feels good to know that you can help her."
Amanda was the seventh child to undergo a bone marrow transplant to treat sickle cell anemia at MUSC since the treatment began about 15 years ago. The procedure carries great risks and is rarely done.
Two of those seven patients who underwent the procedure died during transplant. Patients must be young, have severe symptoms and have a close relative who is a matching donor.
Amanda's parents, Belinda and Abraham Williams, carry the sickle cell trait and have three children. Two of them, Amanda and her brother A.J., 13, have sickle cell disease. Amber only carries the trait. Siblings have a 25 percent chance of matching as donors.
Knowledge is power to the Williams family. Belinda Williams was taught about the disease early because her father carried the trait. About 1 in 500 black Americans, primarily of African descent, are affected by sickle cell anemia. She makes sure her children know which type of the disease they carry and how it affects their bodies.
"This family really understood everything that was going to happen," said Theo Fouts, the nurse who coordinates bone marrow transplants at MUSC.
Amanda's stroke, which affected 5 percent of her brain and left her unable to walk for weeks, was followed by 14 months of pheresis, a procedure in which blood is collected and separated. The patient's red blood cells are replaced with normal red cells and returned to the body.
But over time, scans showed the blood vessels in her brain continued to narrow, a sign of impending stroke. A bone marrow transplant was the final hope.
First, doctors used a course of chemotherapy to kill Amanda's bone marrow. Then, they harvested Amber's marrow, which then dripped into Amanda's body June 27. In the following weeks, Amber's marrow will find its way into Amanda's bones and start producing healthy red blood cells, Fouts said.
After spending three weeks in the hospital, Amanda will stay with her mother at the Ronald McDonald House for 100 days in order for doctors and nurses to monitor her for fever and infection.
The procedure is hard on the family. "It's a major adjustment," Belinda Williams said. She went on leave from work while she stays with her daughters in Charleston. Meanwhile, father and son remain in Charlotte, where Abraham works at The Hartford. They visit on weekends.
The family's health insurance covers 80 percent of the treatment until they reach the deductible. They are expected to pay $34,000, Belinda Williams said, not counting miscellaneous costs such as travel and bills from dental work necessary before the treatment.
She plans to return to work as a medical insurance representative for Presbyterian Hospital. "I want my children to have a sense of contributing to society," she said.
"When I don't get paid, I just say OK. I do what I need to do," Belinda Williams said. "I take a chance and put trust in God."
Most of her energy is devoted to keeping her daughters in good spirits. If they want to dance and sing, she lets them. Butterflies from Amanda's elementary school classmates hang on the wall. Cards and blankets from Victory Junction Gang Camp adorn the hospital room.
If the transplant succeeds, Amanda's risk of stroke should subside naturally, and her status will change from having sickle cell anemia to being a carrier of the trait, Fouts said. She could be cured.
To donate
The Williams' family has established an account with the National Transplant Assistance Fund and Catastrophic Injury Program, a nonprofit that assists families in raising funds for medical care. All donations are tax deductible.
Visit transplantfund.org, or send checks to NTAF, 150 North Radnor Chester Road, Suite F-120, Radnor, PA, 19087. Make checks payable to "NTAF BM Transplant" and write "Amanda Williams" in the memo line.
For more information, call 1-800-642-8399.
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