In honor of sickle cell awareness month, Cord Blood Registry® (CBR) wants to share a client’s triumphant personal battle with the life-threatening disease and help create awareness for CBR’s Designated Treatment Program®.  This community service program is offered free of charge if a family member is diagnosed with a life threatening disease that is treatable with donor stem cells. CBR pays for the cost of processing and storage of cord blood stem cells for five years in the hope that a sibling’s stem cells will be a match.  The Designated Treatment Program allows families in need to benefit from genetically related donor stem cells for diseases such as sickle cell anemia.

Carol Mulumba, who suffered from sickle cell disease, shares her inspiring story with us.

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 transplant.  Luckily, my parents had decided to save my 4 year old 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 10-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 or cord blood transplants. I also got to travel to my parent’s home country of Uganda in EAST AFRICA to help raise awareness there too.

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.