Once upon a time, High school sweethearts, Lukiah Nakabembe and Abdullah Mulumba moved to the US and started a life together. None of them knew that they were both carriers of sickle cell disease or of any sickle cell warriors in their families. Three days after the birth of their firstborn, they were told there 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 agonizingly recalls her feelings.
The couple does not remember the number of times they had to call emergency at 2 a.m. in the
mornings when their daughter was very badly off. They always had a bag packed and ready to run off to the 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 this forgotten and neglected group of people.
The family supported sickle cell initiatives through local sickle cell organizations until 2011 when 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 that the local community-based organizations 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 the Uganda Sickle Cell Rescue Foundation. . This marked the inception of the Uganda Sickle Cell Rescue Foundation (USCRF), a beacon of hope for those affected by this genetic disorder.