At first glance, Carol Mulumba seems like a normal seventeen-year-old girl. She lives in the Bay Area in Northern California and likes to swim, play video games, and hang out with her friends. When she can, she travels and takes cruises with her family.
But ten years ago, she was living a much different story.
When she was born, Carol was diagnosed with sickle cell anemia. Sickle cell anemia is form of sickle cell disease in which the red blood cells become hard, sticky, and shaped like C’s (hence the sickle). They can get stuck in the blood vessels, causing pain and other serious issues.
According to the Centers for Disease Control and Prevention (CDC), “about 1 in 13 black or African-American babies is born with sickle cell trait (SCT).” And even though people with SCT may not have symptoms of sickle cell disease, they can still pass the trait on to their children.
By the time Carol was five years old, the pain from her sickle cell anemia had become unbearable. She would frequently double over in pain, and day-to-day life was growing harder.
“I couldn’t go out much,” she said. “We couldn’t travel or go to places like Disneyland, because if I had a sickle cell crisis, we’d have to leave quickly.”
I asked her what a sickle cell crisis looks like.
“If you saw a child having one, they might be holding a part of their body, like their stomach, crouching, maybe in a fetal position. They won’t want to play; they might even be crying. It feels terrible. And it happens at random, too.”
Over time, Carol continued to need pain medication and several blood transfusions. But the medication often didn’t help the pain. Her doctors told her that she needed a stem cell transplant to repopulate her bone marrow with healthy cells if she was going to survive.
But where would she find a donor?
Her Brother To The Rescue
In Uganda, the Mulumba family’s native country, sickle cell disease is highly stigmatized. It’s treated as a death sentence, and a source of shame for those families with loved ones who are afflicted. So it wasn’t surprising that Carol’s mother, Lukiah, would be hesitant to speak to Carol’s doctor about her worst fears surrounding her illness.
“I was scared and tired of what I had to hear from the doctors, nurses, social workers, and counselors every doctor visit about Carol,” Lukiah says. “Her health continued to deteriorate. After confirming my fears to Carol’s doctor, she educated us on the process of saving cord blood and requested that I notify her if I get pregnant again. She emphasized that the baby’s cord blood could be used to save Carol’s life.”
When Lukiah got pregnant again, Carol’s doctor suggested she speak to CBR about storing her baby’s cord blood. The Mulumbas qualified for CBR’s Newborn Possibilities Program, which provides free cord blood processing and five years of storage to families with a newborn or close family member with a qualifying medical need.
CBR sent the Mulumbas the cord blood collection kit two weeks before the delivery of her son, Mark. The Mulumbas prayed he would not be born with sickle cell disease. Thankfully, he was not, and his cord blood stem cells were a perfect match to Carol’s.
Carol underwent chemotherapy to ablate her bone marrow, so that it could be rebuilt using healthy cord blood stem cells. In October 2008, Carol was admitted to the hospital, now officially approved for a transplant of stem cells from her baby brother’s cord blood and bone marrow.
“The experience was underwhelming,” she recalled, laughing a little. “It was so built up, but it was just receiving blood like I did saline.”
Three weeks after the infusion, she returned home. With her immune system still so weak, she couldn’t leave the house except to return to the hospital for checkups. She’d remain housebound for months while her immune system was rebuilding itself with the help of her brother’s newborn stem cells.
An Unexpected Meeting… With the President?
While she was in the hospital receiving her transplant, Carol and her family were approached by the Make a Wish Foundation. Their question for Carol was simple: What’s your wish?
“At the time, my family loved President Obama. If he won, my parents told me, he would help children in Africa. So when the foundation asked, I told them my wish was to meet the president.”
She didn’t have to wait long. In 2010, Carol and her family were given the opportunity to fly to Washington D.C.
“I was in the hallway standing by a door, and then he opened it and just walked in. He’s really tall, like basketball player-sized tall. And I got to ask him to help the kids in Africa with sickle cell.”
With her immune system fully recovered, Carol returned to school in August 2009. And you might think that being sick for most of her childhood would slow her down. But it didn’t. Not one bit.
Today she’s a senior in high school, and will soon be applying to college. With a 4.0 GPA, she has her options open. “I’m looking at UC Berkeley and Davis, and USC and Ivy League schools,” she says. She plans on studying to become a doctor.
In her spare time, she’s writing her first book: a tell-all story about her transplant journey. She hopes her perspective will serve as a guiding voice for people going through a transplant.
“There are some things they don’t tell you when you’re a kid. Like about being in the hospital almost a month after the transplant. I didn’t know that.” She wishes she’d known to ask questions like: “How long will I have to wear this mask and hat?”
She’s busier now than she’s ever been. Besides planning a trip to Spain and preparing for college, she still counsels children who are undergoing stem cell transplants. In fact, she’s been doing that ever since her own. In the summer before starting high school, she traveled with her parents to Uganda and co-founded the Uganda-Sickle Cell Rescue Fund to raise awareness of sickle cell anemia while erasing negative stigma surrounding the illness. As of 2016, it was estimated that 20,000 babies per year are born with the disease.
Carol spoke at radio stations, on television, and at conferences of up to 8,000 attendees. She likes to talk about her emotions during that pivotal time in her life, and also to show that sickle cell disease can be cured.
“From my talks,” she says, “I hope people learn that medicine isn’t just trying to get money out of them or make them sick. It’s there to help them, not harm them.”
Spoken like a true doctor!
In 1992, CBR founded the Newborn Possibilities Program to support families who need stem cell preservation the most. If a family is identified as potentially able to use their newborn’s stem cells for a qualifying medical need, we provide free processing and storage for five years. The Newborn Possibilities Program allows us to advance exciting new research while also protecting the amazing potential of newborn stem cells for every family we can.
If you think you’re eligible, CBR’s genetic counselors are here to discuss your medical history and answer questions about how newborn stem cells might help your family. Please call 1.888.932.6568 and ask to speak to a Certified Genetic Counselor.