When Zivile Nkatu was two months old, he started showing signs of illness. But for over a year doctors had no diagnosis, and Zivile spent long stays in the hospital without explanation. When that diagnosis finally came, it was worse than expected: leukaemia.
Zivile’s mother Nello said the news came with a big learning curve. Before Zivile’s illness, Nello, like many others, believed that cancer was an older person’s disease. She says, “With kids, you think they just have to live their life, play and be happy, not understanding that some kids will spend most of their time in the hospital, kids who can’t play or go outside.” This is a misunderstanding that so many of us have. We think that cancer is for certain types of people—ages, races, walks of life, etc. But anyone, anytime, anywhere can get cancer. It doesn’t matter where you’re from or what you look like.
The wait for a donor would be a long one. In the meantime, Zivile underwent treatment at Red Cross War Memorial Children’s Hospital. “It’s our second home,” Nello says. “It opened my eyes to cancer at large.”
It’s also where Nello got the idea for Isipho, a group she created to foster awareness around blood diseases. She explains, “Someone right next to me could have been a match, but they didn’t understand that they may carry something inside them that could save someone’s life. Especially in our Black community, there are things that people think aren’t doable. They need to know that what needs to be done is something they can do.” What a beautiful initiative, Nello—and with such a perfect name! Isipho translates to “gift”, and when you sign up to be a bone marrow donor, you are literally giving the gift of life.
Nello also joined the My Child Has Cancer Trust, a support group started by mothers at Red Cross. Now, she works with them. “We cry, we laugh, we understand each other,” Nello says. “When we welcome someone new, we are there to say, ‘Here I am, so you are not alone.’ We journey with them. The work is challenging, but it is a part of me.”
During Zivile’s illness, Nello sourced strength from her mother and husband. Nello says, “My mother had to handle more than I did, because she had to stress for her child and her grandchild.” Her mother organised food and transport, kept family and friends informed, and assisted with the family’s growing financial concerns. “She was my hope,” Nello says.
As for her husband, Nello was awed by his dedication in the darkest times. “To be the father, provider, and lover all at once is one thing, but he had to sort through his grief too. But he was strong for me and for our other child, because we needed it.”
Finally, five years after diagnosis, the SABMR was able to locate a donor for Zivile. The transplant occurred soon thereafter, which successfully cured Zivile of his cancer. Now age 11 and in Grade 4, Zivile is “full of life, soft-hearted, and disciplined,” Nello says. “He can turn your mood around. If you’re down, you find yourself laughing.” Zivile is busy with sports, including hockey, cricket, tennis and karate, and he loves to sing and dance to hip hop.
Of Zivile’s donor, Nello says, “In Zivile’s mind, that guy is a hero. He is a hero to us all.” Zivile often writes letters to him, which Nello sends. And every year, on 19 March, they celebrate Zivile’s rebirthday. “It’s the day we cherish most as a family,” Nello says.I know many young boys like Zivile, and it’s heartbreaking to imagine what his family went through during his medical journey. Thankfully, this one has a happy ending, but without more donors registered—especially donors of colour, to help save more patients of colour—there are many families who don’t get that second chance for their babies.
That’s why we need you! Sign up now to be a bone marrow donor and give a child like Zivile the chance to grow up.
Siyabulela kakhulu kwi donor yaye nezinyanya zekhaya ziyabulela yaye ZIVILE!