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The pain, the sacrifice and joy unspeakable

Posted by Administrator on October 6, 2010

The Mulumbas: From right, little Mark who donated the bone marrow, Abdullah Mulumba, Aaliyah (sitting on his lap), Lukiah Mulumba and Mariam-Carol Mulumba who has conquered sickle-cell anaemia

The Mulumbas: From right, little Mark who donated the bone marrow, Abdullah Mulumba, Aaliyah (sitting on his lap), Lukiah Mulumba and Mariam-Carol Mulumba who has conquered sickle-cell anaemia

When high school sweethearts Lukiah Nakabembe and Abdullah Mulumba moved to the US and started a life together, neither knew of any sickle cell disease sufferers in their families. The sickle cell is an abnormal red blood cell that has a crescent shape and an abnormal form of haemoglobin.

Unknown to the Mulumbas, they were both carriers of the cell. This combination gives a 25 per cent chance of begetting a child who will suffer from sickle cell anaemia, 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 daughter, Miriam, they were informed that she was a sickler.

Mariam Carol Zawedde Mulumba is now ten years old and has completed her second full year free of sickle cell anaemia.

Sickle cell anaemia sufferers and their families have to grapple with the overwhelming effects of the disease. The deeply-rooted stigma causes families in Uganda to sometimes hide their sick for fear of being labelled as cursed and excluded from social functions. Intimate relationships with any member of family that has a sufferer are avoided.

“I knew how sicklers were treated in Uganda. They were regarded as walking corpses. That I had given birth to one was very painful because I knew she would suffer all her life, having to take medicine. I cried and I was depressed. The baby was so ill, I sometimes thought of poisoning myself and leaving the suffering behind. I wished that I had aborted her before she was born,” Ms Mulumba, a captain in the US Army recalls.

Her family back in Uganda was sympathetic, but found explanations for the situation: “Maybe you cursed someone or took birth control pills,” they would say.

The couple cannot count the number of times they had to go to the emergency room at odd hours when their daughter fell ill. They always had a bag packed and ready to run to hospital because of the frequent crises. Cpt Mulumba was shocked at the lack of information about sicklers in Uganda.

“They didn’t have a website and there was not much coverage about sickle cell disease sufferers. This means that people didn’t think it was an important issue. Their ward at Mulago Hospital was in bad shape and their families were not giving them the necessary care and support. People are still ignorant about the disease and are looking for healing from traditional medicine and prayers.”

Cpt Mulumba was lucky that her daughter was getting the necessary medication and care. She wanted the other sicklers in Uganda to have the same benefits. Therefore, she and her husband formed the Uganda-American Sickle Cell Rescue Fund to provide support and information to that forgotten and neglected group of people.

They visited Uganda in 2006 and donated land and a small structure in Kawanda to the cause of sickle cell disease sufferers. They also organised a campaign to provide information on the disease.

When Cpt Mulumba got pregnant again, doctors encouraged her to have an abortion. But even after their experience with their first born child, the couple could not do it.

“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.

But the couple had a healthy sickle cell-free child — Abdullah Mark Mulumba. They were grateful that they had followed their instincts to keep the pregnancy because it is Abdullah who donated bone marrow and whose umbilical cord blood was used to give his sister a new lease of life.

When Mariam was three years old, a doctor at a sickle cell clinic in Michigan had told the Mulumbas about the new bone marrow transplant therapy. It has a high mortality rate, but if successful, it could offer their daughter a sickle cell-free life, they were informed. But the cost of the treatment was way above their means.

Mrs Mulumba joined the US Air Force in 2007 and gave birth to Aaliyah Nagginda Mulumba, who was also healthy. But Mariam’s condition continued to deteriorate. She had severe pain in the chest, abdomen, head, and feet. At times strong drugs like morphine and dilaudid could not relieve it.

The couple appealed to the Air Force to help cover their daughter’s medical bills and their request was granted. The force even offered to pay for the bone marrow transplant.

Mark Abdullah, the son who would have aborted had they listened to people, was found to be a perfect DNA match and could, therefore, donate the bone marrow.

The marrow was extracted by drilling both his femurs from the back. The femur is the longest and thickest bone of the human skeleton. It extends from the pelvis to the knee.

Some 500 millilitres of marrow was extracted from each side. Mariam was given drugs to prepare her immune system for the transplant. She also had to undergo chemotherapy to clear the sickle cells 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 off and we were not sure her immune system would function properly.”

But after six months of taking extreme hygienic precautions which involved cleaning and disinfecting her linen and room everyday to eliminate bacteria and turning away all visitors to the house, the family was rewarded with a healthy daughter.

After the treatment in 2008 at a Methodist Children’s Hospital in the US, Carol has now been declared sickle cell-free.

When she was hospitalised, the Make a Wish Foundation had asked the eight-year old Miriam Carol Mulumba to make a wish. Hers was to meet President Barack Obama once she was healed. She wasn’t disappointed.

In July, Miriam and her family were President Obama’s guests.

“President Obama himself opened the Oval Office door and said, ‘hi Carol .’” She replied, “Yes President Obama,” Uganda’s New Vision quotes her as saying. It was a day the Mulumbas will never forget. What with US President terming them as his cousins once he learnt they were Ugandans.

“Obama,” writes the newspaper, “autographed one photograph for Miriam Carol Mulumba, gave her gifts which included a presidential ’WH’ coin.”
Obama too had nice words for her brother Mark who had donated the bone marrow.

“You are my man,” he told the boy.

And the once stunted, pale-skinned poor eater with jaundiced eyes typical of sickle cell sufferers is a perfect picture of health.

When the family visited Uganda recently, Miriam-Carol could not stop telling her mother how hungry she was.

Their mission was to help raise awareness about the disease and to offer support for the sickle cell disease sufferers. The family believes that its earlier commitment to that cause brought them such a good fortune.

“Tests have shown no sign of rejection of Mark’s tissue. His bone marrow lives in Mariam, his older sister, and produces healthy blood. That boy is my hero,” says Cpt Mulumba. You wouldn’t miss the emotion in her voice even if you wanted to.

Sometimes the mother feels like shouting out aloud to tell the world how lucky she is to have her daughter back. She is grateful to the American military, which has so far paid about $25,000 (Sh2 million) in medical bills and follow-up tests.

“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.

“I am blessed because if I had not given birth to a child with sickle cell disease, I would never have known how terrible it is,” she says.

Mr Mulumba is also happy about his daughter’s new health.

“It was hectic taking care of her, especially during the extremes in weather like the winters. I am delighted and relieved that she is now cured because looking after her was supposed to be a life-time commitment,” he says. They don’t intend to have more children.

Ms Mulumba advises couples intending to get married to go for a sickle cell test. “Having a sickler is traumatic and draining and it’s not worth it if the two of you are carriers,” she says.

Source: Daily Nation

2 Responses to “The pain, the sacrifice and joy unspeakable”

  1. NWM said

    May God continue blessing their family.

  2. Kaufman said

    May your courage be rewarded with good health within your
    family. God Bless.

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