My Life Through Sickle Cell
Hi, my name is Marriam Carol Mulumba. You can call me Carol. I was born on May 31, 2001. I am 12 years old. I was born with a disease called Sickle Cell Anemia. Unfortunately for me, I had the severe type. The doctors said I wouldn't live past five. My mom and dad were depressed all the time. Everything was hard for me. Running, walking, and even holding something was so painful! My life was miserable.
My brother Mark was born on August 8, 2003. My parents found out that they could save his cord blood so that it could be used later to possibly help me. That's what they did when Mark was born. My mother's doctor contacted Cord Blood Registry, which helped my parents to bank Mark's cord blood for free through their Designated Treatment Program. My sister Aliah was born on July 20, 2007 and they banked her cord blood too.
At the age of five year, my disease was getting even more severe. I took pain drugs and had multiple blood transfusions, but even morphine or dilaudid was not stopping the pain and I was very sick. I didn't have much time. My blood doctors said that for me to live I needed a transplant. Tests done earlier showed that both my sister Aliah and my brother Mark were perfect matches for me! My doctors at Lackland Air Force Base in San Antonio coordinated with Methodist Hospital in San Antonio Texas who performed my transplant. I was admitted to Methodist for a month. On October 28 and 29th in 2008, I received both my brother Mark's saved cord blood and some of his bone marrow too. He had to go through a surgery when he was only 5 years old to save my life!
After the transplant with Mark's cord blood and bone marrow, I started to get better and soon enough I was free! Now when you look at me you'd think I never even had that horrible disease. My yellow eyes disappeared and are now white. My chapped lips are now rosy pink! I feel like any normal kid, but I still don't like running. Now I can bike with my friends for over two miles without any chest pain or fainting like before!
I even got to meet President Obama in the oval office, thanks to the Make-A-Wish Foundation! All because of my brother's cord blood and bone marrow transplant, I am your average 12 year old girl.
My family originally come from Uganda in East-Africa. Because of what we went through as a family with my sickle cell, my parents started a charity called Uganda-American Sickle Cell Rescue Fund (UASCRF) to educate people about sickle cell disease and its cure through use of cord blood and bone marrow transplant. Their goal is to develop sickle cell policies and build a sickle cell center in Uganda. I am proud to be able to tell people about my experience and help others. My mom let me speak to several children waiting for transplant; I counsel them about chemotherapy, cord blood, and bone marrow transplant. I tell them that, it will be ok and it is worthy having a transplant.
Thank you to Methodist Hospital, the Air Force, CBR, my friends, family, and all of my supporters!