Carol’s Story: A Cure for Sickle Cell Anemia

In honor of World Sickle Cell Day, we’d like to introduce you to Carol Mulumba, a very special CBR client with an inspiring story to tell you, in her own words:

My name is Mirriam Carol Mulumba, but my friends call me Carol. I am the first born child to my parents Abudullah and Lucky, followed by my younger brother Mark and little sister Aliah. When I was just three weeks old, my parents were told that I had sickle cell disease. My mommy and dad cried because at one time, children with the disease rarely lived past their teens. I was very sick. Whenever I got a fever I had to stay in the hospital for a week or more and constantly had horrible pain. My head felt like someone kicked it, my stomach felt like someone punched it, my foot felt like it was stuck under a rock and my heart felt like it was being squeezed. I spent so much time in the hospital on morphine drip, oxygen and blood transfusions.

When I was 6, it got so bad that the doctors said my only hope would be a stem cell transplant. Luckily, my parents had decided to save my younger brother Mark’s cord blood stem cells and he happened to be a perfect match for me! I had to go through chemotherapy before receiving my brother’s bone marrow and cord blood stem cells and stayed at Methodist Children’s Hospital for 21 days. The effects of chemotherapy were rough for me. I lost all of my hair, my face was swollen, had stomach problems and bad mood swings.

A month after my transplant, testing showed that I was cured of sickle cell disease! I don’t have pain anymore. After my transplant, I started a brand-new life and I’m now a normal and healthy 13-year-old. All kids with sickle cell disease should be able to start a new life too.

Thanks to the Make-A-Wish Foundation of Texas, I was able to go on our first family trip ever to meet my idol, President Barack Obama in the Oval Office. I asked him to take a message to the world – there is a cure for sickle cell through bone marrow/cord blood stem cell transplants. I also got to travel to my parent’s home country of Uganda in East Africa to help raise awareness there too.

Mulumba family meets President Obama in the oval office thanks to Make A Wish Foundation

Thank you for sharing your amazing story with us Carol! We are so proud of you!

Ultimate use of cord blood stem cells will be determined by the treating physician who will consider if they are applicable for the condition and should come from the patient or a suitable donor (like an HLA matched sibling). There is no guarantee that treatments being studied in the laboratory or in clinical trials will be available in the future.

6 thoughts on “Carol’s Story: A Cure for Sickle Cell Anemia

  1. Hi Carol, My name is Berna, and I am the grandmother of a 19 year old granddaughter who was diagnosed with Sickle Cell Anemia at 2 months old.At the age of 11, She was diagnosed with Pulmonary hypertension, and Pulmonary Embolism. She to has received multiple blood transfusions, and is in the process of getting a bone marrow transplant. Here in the past week,she’s been sad,depressed, because things are ready to go a different turn in her life. I encourages her to not think on the things that’s going to keep her dowm (mentally) for instance, not being able to be around family for a few months or loosing her hair,or having to be away from her Church family. But hearing your story made the both of us realize that things are going to be alright. Your story is so inspiring and uplifting and now she has a complete different look on what to expect, and believing that God can and will answer her prayers, as He did for you and your family. Oh, pardon me for not introducing her to you. Her name is Deborah. Deborah has 3 younger sisters. I have been raising them going on 10 years now. I would love to be able to correspond with your mom as a support person, being that you and your family have been down that road, we’re getting ready to go down. I Thank you for sharing your story with us and look forward to speaking with you. If I can remember, I think we might have met before, at the Sickle Cell camp that took place in Burton,Tx.some 5 or 6years ago. If so it is a blessing to hear that you are Sickle free. May God bless you is my prayer.

    1. Hello, Ms. Allen,
      I apologize for not replying before. I have just seen your email. I am glad that your granddaughter is getting care for her health issue and I’m grateful that my story has helped you through this rough time. A transplant is tough on the recipent and the family. I had no story to look at for guidance during my transplant and I believe that looking at another account helps immensely. I wish you and your granddaughter luck during the transplant, she needs all the support she can get and I’m sure you’ll give it to her along with her other family members. Please let my mom know if you need anything for I do not have an email account. Her email is mulumba@uganda-americansickle.org
      – I wish you luck,
      Carol Mulumba

  2. Hello carol a lot of congratulations for shares your great educational testimony of the sickle-celled anemia me to give very much taste of which it(she) is great brave one and luchadora of the sickle-celled anemia I you would like to know some day very much in order that continué sharing your great educational testimony with me on the sickle-celled anemia I am an educator of the sickle-celled anemia of Dominican republic. That god blesses you great carol and to your great family. A saludos

    1. Hi Mr. Taveras,

      I am glad that you have enjoyed my story. You are free to use my story in your teachings of Sickle Cell if it will help. I like to tell my story to give more information about Sickle Cell, and to give people going through what I did a helpful window for the path ahead, as I never had any resources like that. My parents and I were very new to this procedure. I am happy that you educate people on Sickle Cell Anemia as I believe most think of it as only a curse or something like that. Yes it is bad, but if you are educated on the subject, you’ll do better in dealing with it. I apologize for not answering sooner as I was just shown this message. If you wish to contact me or my mom, you can email my mom through her email as I do not have one. It is mulumba@uganda-americansickle.org. —–Carol Mulumba

  3. many thanks for your comment carol mulumba, you’re a great fighter of sickle cell anemia, has a great testimony that has to carry the whole of Africa, you’re a very brave girl that has dedicated you com love, commitment and solidarity to bring education sickle cell disease to Uganda as a specialist in education and prevention of sickle cell anemia in the Dominican Republic, I congratulate you on taking education of sickle cell anemia to uganda, africa, I would love to someday meet you carol mulumba and your family, while I would love to also join you carol mulumba in the fight against sickle cell disease in Uganda, with the purpose of bringing education, counseling and prevention of sickle cell anemia to next of you carol mulumba for any information we are in contact , Cheers

  4. Hello good to hear your success story and that you are cured if Sickle cell disease. This is great news because people now can have the urgent help to transform their lives. This intervention is wonderful because it helps to deal with the pain.

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