At age 20, Desire Namazzi of Uganda was struggling with constant headaches, night sweats and fatigue. However, after many tests at multiple hospitals, staff always told her it was because of a bacterial infection or malaria. But her symptoms remained.
Then she found Global HOPE® at Mulago Hospital in Kampala, Uganda. “Finally, one doctor ordered a biopsy after receiving the results of a blood test,” Namazzi said. “That’s when they discovered the cancer.”
Since 2019, Lions Clubs International Foundation (LCIF) has partnered with Global HOPE®, a program of Texas Children’s Hospital and Baylor College of Medicine, to help address the huge discrepancies in outcomes from childhood cancer in sub-Saharan Africa. Through the program, Namazzi was diagnosed with acute lymphocytic leukemia, a fast-growing type of cancer that can be fatal in a few months without treatment.
Lion Dr. Joseph Lubega, director of the Global HOPE® program, said that approximately 100,000 children get cancer each year in Africa and 90 percent of them die because of the inability to get proper treatment. “Cancer in children often progresses faster than in adults. Thus, access to immediate care is critical,” he said.
Namazzi began her treatment right away, trying to maintain a positive attitude, but admits one of her biggest worries was losing her hair. “The day I saw it fall out the first time was when it hit me that I was actually sick. It was the first time I truly broke down,” she said.
Unfortunately, her first round of chemotherapy did not work because the cancer was too aggressive, and her doctor said they had to intensify the treatment. He also told Namazzi and her family to prepare for a bone marrow transplant because it would be the safest option after chemotherapy to avoid a relapse. Because a transplant was not available in Uganda at the time, Namazzi would have to travel to Apollo Hospital in Delhi, India.
Namazzi said the second, more intensive round of chemotherapy was much more difficult, and she felt very sick. “Thankfully, though, the treatment worked. By the time I went to India, I was in remission.”
Namazzi had her bone marrow transplant surgery a month after arriving in India. “My mom was my bone marrow donor and thankfully, although it was only a 50 percent match, my body did not reject it,” she said.
Now 23 years old, Namazzi has a fresh perspective on life. “Throughout this experience, I learned that mental health is pivotal,” she said. “When I found out I had cancer, I didn’t immediately think about dying. I ‘knew’ I was going to be okay.” However, in the villages of Uganda, where few people survive cancer, many have a different perspective. “But, cancer does not always have to be a death sentence, and I am here today as proof,” Namazzi added.
She says her experience taught her a lot about community and she considers her doctors and nurses family friends now. “We also met a number of families, and we all supported each other emotionally, giving advice and checking in on each other.”
She returns to Global HOPE® at Mulago Hospital each month for checkups and has found ways to give back by collecting money for transportation, food and anything else families in treatment need. “This is a way I can help, but also a way to give back; a ‘thank you’ for the support I got when I was in need,” she said. Namazzi also found another way to serve others, recently becoming a Leo in Uganda.
Her experience has also changed the trajectory of her career path. Though she originally started college planning to pursue real estate, when she returned to school after treatment, she changed her major to psychology. “I eventually want to pursue a master’s degree in psychology to learn how the immune system interacts with psychological processes. Ultimately, I want to open a private practice so counselors can offer their services to children with cancer and their caretakers to support their mental and emotional well-being, improving their quality of life.”
Namazzi is grateful to everyone who supported her during her cancer journey, including family, friends and community members who provided emotional and financial support during her treatment. “I also want to thank everyone at Lions and LCIF for your kind hearts, generosity and support,” she said. “You’ve impacted so many lives at the Global HOPE® programs across Africa, including my own, by making treatment and medication free, available and accessible.”
“Thank you from the bottom of my heart,” she added. “I wouldn’t be here without you.”
To learn more about ways that Lions and LCIF are helping support families with children with cancer, visit lionsclubs.org/childhoodcancer. To learn about LCIF’s partnership with Texas Children’s Global HOPE®, visit lionsclubs.org/globalhope.
Andrea Small is the senior marketing and public relations specialist for Lions Clubs International Foundation.
