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 Airforce recalls.
She has dedicated her life to making a difference and raising awareness to the Struggles of living with Sickle cells.
BIOGRAPHY: Captain Lukiah Mulumba
Name: Lucky Lukiah Mulumba, RN, Captain, USAF, MSN, FNP
Citizenship: American (Ugandan-American)
Birth Country: Uganda
Profession: Critical Care Nurse for 10 years now.
Career: US Air force military officer at rank of Captain
May 2009 – Master’s Degree in Nursing (Specializing in Family Nurse Practitioner) – Stony Brook University, New York
May 2000 – Bachelor’s Degree in Nursing – The Catholic University of America, Washington, D. C.
Secondary School – Ndejje senior secondary school, Uganda
Primary School – Namugongo girls’ primary boarding school, Uganda
March 2005 – Diploma, Air Force Commissioned Officer Training School – Maxwell, Alabama
October 2010 – Diploma, Squadron Officer School resident program – Maxwell, Alabama
I joined the United States Air Force (USAF) in 2005 through the officer Accession program. I was immediately commissioned at a rank of second lieutenant.
Awards/Medals / Memberships:
- Air Force Outstanding Award
- National Defense Service Medal
- Global war on Terrorism Service Medal
- Top Ladies of Distinction Inc Award. Annual Spirit Awards in Health and community Service
- Member – Sigma Theta Tau International, Kappa GAMMA Chapter
- Member- American Advanced Nurse Practitioner
- Member – American Nurses Association
- President & Founder – Uganda-American Sickle Cell Rescue Fund
- Board of Directors – Uganda-American Sickle Cell Rescue, Kampala branch
I am happily married to a wonderful man called Mr. Mulumba Abudallah. He is and has been my hero during the difficult times or trials when our daughter Carol battled with sickle cell disease. My husband is another man behind my strength during these trials and success of the sickle cell cause. We have three beautiful children: a girl Carol Marriam Zawedde 9 years old, a boy Mark Kanabi, 7 years old, and a girl Aliah Naginda who is three years old.
Carol underwent a series of chemotherapy treatments, antibiotics, several blood transfusions, and multiple diagnostic tests in preparation to cure her sickle cell disease that had claimed her life. On October 28th 2008, Carol underwent a bone marrow and cord blood transplant to cure sickle cell disease. Today, the US Air Force in conjuction with civilian doctors continue to inform us that Carol’s DNA indicates 0% sickle cell free and 100% donor blood.
The procedure was over 250,000 dollars which was 100% paid for by the US Air force. I am so grateful to God and the US Air force family. I am devoted to use Carol’s experience and my blessing in America to continue helping God’s suffering sickle cell disease patients in Uganda.
First of all, I feel myself quite blessed to be part of the US Air Force the most technologically advanced and professional fighting machine in the world. I am an officer at rank of Captain. I serve on active duty. I am currently attached to the adult intensive care Flight. I am proud to serve my country “America” and to give back to America for what it has enabled me to be who I am today.
History of my humanitarian work:
I donate 85% of my leisure time to sickle cell disease community. My first born daughter called Carol Marriam Zawedde who is 9 years old now was diagnosed of sickle cell disease in 2001 at the age of three days old. Since her diagnosis, she went through multiple hospitalizations with complex diagnostic studies and procedures. Most of these hospital visits were very painful and emotionally draining for me and my entire family. We experienced sleepless nights, stayed up late administering narcotics to my angel just to eradicate her sickle cell pain crisis. There were times when oral Morphine, Dilaudid, Tylenol with codeine, Motrin, and heat pads could not relieve her pain at home. For several times, we traveled in the mid-nights to take little Carol to several emergency rooms.
One day in 2005, I realized that I was so fortunate that my daughter was born in the United States because she is able to access the latest medical interventions in sickle cell disease management known to any man in the world. Also, I was so distrouted to learn that sickle cell disease in Uganda was a forgotten enemy where by sickle cell patients are ostracized where the basic pain management protocols are missing. I realized I had to do something. I got in touch with the local sickle cell association of Uganda. The best way to help was to form a non profit organization called “Uganda –American Sickle Cell Rescue Fund” (UASCRF) that would serve as conduit of assistance to the Uganda sickle cell disease cause.
UASCRF “work towards the improvement of the general quality of life for people with sickle cell disease through treatment, fighting against the stigma associated with the disease, providing education and information on sickle disease management”
Since the opening of the UASCRF with the help of our supporters and well wishers, I have contributed to help sickle cell disease sufferers in Uganda in these ways as follows: The first problem I solved was to buy a van to alleviate transportation problems the local Sickle Cell Association faces. 80% of the money came from my family and the rest were donations from well wishers here. Following my visit to Uganda in early 2008, and touring of the Sickle Cell Clinic and the Association offices, I was so surprised to find the clinic in deplorable situation. There was patient overflow, luck of any equipment. This is a dilapidated building made of plywood with mold and fungi growing in all crevices. The pediatric and adult patients were all seen in the same small space without privacy. There was no electricity, no running water, and most certainly no political will to change the situation quo.
As a result of our noise and increased awareness, the government of Uganda donated money through the Sickle Cell initiative to construct the current sickle cell center. Although it is not spacious but it is more appropriate for the patients. I realized that the sickle cell community needs to have a center with clinics, counseling, and training facilities. In addition, there was no land to build such a center in Uganda. I therefore decided to donate land for this purpose. I am happy to report that the ground breaking ceremony took place August 2008. I have also done counter-less interviews to the local, electronic, and print media that has helped to give sickle cell disease in Uganda a front line. I have also been assisting the local Sickle Cell Association of Uganda both financially and material. I funded the first sickle cell disease documentary which should be airing on local TV after its remake.
During my last visit to Uganda in August 2010, I sponsored a one week sickle cell awareness week in Kampala region. My husband and I donated one week and taught sickle cell disease management standards in America verses Uganda to Mulago medical staff and nursing students, Nsambya nursing students and medical staff, Kibuli medical staff, and Rubaga medical staff and nursing school. I also presented to Kampala international University. I was also involved in the sickle cell ground breaking at Kawanda. I sponsored the first sickle cell walk which started from Mulago hospital to Kampala city square and back. We ended with the sickle cell children’s party where we fed 1000 people including sickle cell patients and their children and families. Each sick patient received a plate of food, 2 sodas, 1 bottle of water, a bag of gifts donated from US Air Force well wishers and other well wishers. There was free entertainment for the children from their favorite local singer “Eddie Kenzo”. Lastly, we are in the process of opening our local branch in Kampala.
Always remember your origin, take a moment to thank God for what He has on plate for you. Also never give up striving for what He has in store for you! I have always been a naturally caring, down-to-earth, aggressive, strong, focused, hard working, and a perfectionist woman. To my fellow American-Ugandans, life is full of challenges, but each comes with a great lesson to enhance your process of moving to another step. Thank you God, America, Air force, Uganda, my dear parents and family, Kiiti village residents for helping me fly on your shoulders. Because of you, I am who I am today and others get to share my sweats.
Captain Lukiah will be one of our Honored Guests at the First Ugandan Diaspora Social Networking Event on December 29th, at the Serena Hotel. Join us as we celebrate her inspirational work and testimony about a disease that is such a stigma in Uganda.