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, in 2005 they formed the Uganda-American Sickle Cell
Rescue Fund to provide support and information to these forgotten and neglected group of people.
The family supported sickle cell initiatives through local sickle cell organisation until 2011 where then
Captain Lukiah mulumba met with Hajj Bulaimu Muwanga Kibirige at the UNAA Convention in Dallas
Texas. At this forum, she lamented the misappropriation and abuse of funds which the local community
based organisations were doing. This meeting led to the creation of the Uganda American sickle Cell
rescue fund Uganda, an initiative solely formed to support sickle cell activities in Uganda.
Since 2013 we have worked as Uganda American Sickle Cell Rescue Fund .But following the resolution of
10.1 which took effect on 30th March 2016 following the 10th Board Meeting held at Roofings Lubowa
on the 29th of March 2016 we are now Uganda Sickle Cell Rescue foundation.