CAROL SURVIVES SICKLE CELL ANEMIA WITH A BONE MARROW TRANSPLANT

In Uganda the dilemma of a sickle cell sufferer and the immediate family goes beyond grappling with the overwhelming health effects of the disease.
The deeply-rooted stigma from society alone causes families to sometimes hide their sick for fear of being labeled cursed and eschewed from social functions. When known that a family has a sufferer, intimate relationships with any member of that family are shunned.

High school sweethearts, Lukiah Nakabembe and Abdullah Mulumba moved to the US and started a life together. None of them knew of any sickle-cell sufferers in their families. Unknown as well was that they were both carriers of the disease, a recipe that gives a 25 per cent chance of begetting a sufferer, a 25 per cent chance of a perfectly normal child and a 50 per cent chance of getting a carrier.Three days after the birth of their first born, they were told their now nine-year-old daughter, Mariam Carol Zawedde Mulumba was a sickler.

"I knew how sicklers were treated in Uganda; like walking corpses. That I had given birth to one was very painful because I knew she would suffer all through life taking medicine. I cried so much and was very depressed. The baby was so sick I sometimes just thought of poisoning myself and leaving all the suffering behind. I wished so many times that I had aborted," Ms Mulumba agonisingly recalls her feelings.

Her family back in Uganda was sympathetic but found their own reasons to explain the situation: "Maybe you cursed someone or took birth control pills to end up with such a baby," they would query her.
The couple does not remember the number of times they had to call emergency at 2a.m. in the mornings when their daughter was very badly off. They always had a bag packed and ready to run off to hospital for these kinds of crises. But when she went on the Internet, Ms Mulumba could not believe the suffering that Ugandan Sickle Cell sufferers went through.
"They didn't have a website and there was not that much coverage of sickle cell suffering in Uganda. This means people didn't think it was an issue. Their ward at Mulago was in very bad shape and their families were not giving them the necessary care and support. People were still ignorant about the disease seeking traditional medicine and pastors' prayers for healing."She felt lucky that at least her daughter was getting the necessary medication and care. But she wanted to give the same benefits to other sufferers in Uganda. With her husband, they formed the Uganda-American Sickle Cell Rescue Fund to provide support and information to these forgotten and neglected group of people.
They came down to Uganda in 2006 and donated land with a small structure to the cause in Kawanda and gave free information on the disease. Ms Mulumba got pregnant again and medical personnel quickly jumped to the couple's rescue encouraging them to abort. Even after all they had gone through with their first born, they didn't feel they could bring themselves to terminate a life.

"If those are the children God was going to give us, we were ready. People despised us for the decision and they were right because we were suffering so much already and now we wanted to keep this pregnancy," she remembers.

The couple gave birth to a healthy sickle-cell free Abdullah Mark Mulumba. They were later more than grateful they had followed their instincts to preserve the pregnancy. Because it is their son who donated the bone marrow and whose umbilical cord blood was used to give his older sister a new lease of life. It is like God had a surprise for them in the form of complete healing for their efforts in helping other sickle-cell sufferers. When she was three, a doctor at a sickle cell clinic in Michigan had informed them about a new therapy called bone marrow transplant (BMT) that had a high mortality rate but if successful, could offer a sickle-cell free life to their daughter. It was a very expensive procedure and they couldn't afford it. When Mrs Mulumba joined the US Air Force in 2007, she again gave birth to Aaliyah Nagginda Mulumba who was also sickle cell free. But their first born's condition got worse. She had severe pain all over the body-chest, abdominal, headaches and feet-that was unrelieved by strong medications like morphine and Dilaudid. The couple applied to the Air Force to cover the medical bills for their daughter and their request was granted to pay fully for the procedure.
Her brother Mark Abdullah was found a perfect DNA bone marrow match and could donate the bone marrow that would then be transfused into the sister. The bone marrow was extracted by drilling through both his femurs from the back and then getting out 500 mls of the liquid from each side. Then, different drugs were administered to wipe out Mariam's immune system and prepare it for the transplant. Afterward, she was given chemotherapy to clean her system completely of any sickle cell in her body before the bone marrow and her brother's cord blood was transfused into her system.
The hardest part was the fear of the unknown, her mother says. "Her hair was falling out and we were not sure her immune system would function properly."
But after six months of taking extreme sanitary precautions of cleaning her linen and room everyday with bleach to kill bacteria and turning away all visitors to the house, the family was rewarded with a healthy daughter. She has been confirmed 100 per cent sickle-cell free. And the once stunted girl with pale skin, poor appetite and yellow eyes, typical of a sickle-cell sufferer could not stop telling her mother how 'so hungry' she was when I was with the family when they visited Uganda recently. They were here to raise even more awareness and to even show more support for the sickle-cell cause if it is only their earlier commitment that has brought them such a wonderful turn of good fortune.

"Tests show no rejection of Mark's tissue. His bone marrow lives in Carol, his elder sister and produces healthy blood. That boy is my hero, that one there," Ms Mulumba says aloud with a lot of emotion such that he can hear. She looked like she could scream it if that is what it would take for the world to know how lucky she is to have gotten her daughter back. She is at the point of choking with emotion again as she talks of what the American Military, which has so far paid about $25,000 (Shs55m) in medical bills and follow-up tests, means to her. "They did not discriminate against me because of my colour. They readily accepted to support us and they have done everything to make sure Mariam is well. I have so much love and respect for those people," she says.

The couple had been told that their daughter would not live past the age of 10 and they call this a blessing. "I am blessed because if I had not given birth to a child with sickle cell I would never have known how terrible it is," she says. Mr Mulumba too is excited about his daughter's new health status. "It was hectic taking care of her especially during the extremes in weather like the winters. I am very delighted and relieved that she's cured because looking after her was supposed to be a lifetime commitment," he notes. He says they are not planning to have more children. Ms Mulumba advises all couples intending to get married to go for a sickle cell check-up to rule out the possibility of being carriers the way they do for HIV. "Having a sickler is too traumatic and draining and it's not worth it if the two of you already find yourselves to be carriers," she warns.

Source: Daily Monitor