Munashe’s Story

When Munashe was born in 2020, I was a first-time mother. My pregnancy had been normal. I had no warning that anything would be different. I expected the ordinary shock of meeting my first child, the kind every mother talks about. But when he came, I saw something on his back.
It looked like a tail.

I remember looking at him and asking, “What is this?”
The doctors explained that it was a vestigial tail and that Munashe would need surgery. I was still trying to understand what that meant. I was still recovering. I was still holding my baby and trying to find the language for something I had never seen before.

Then came the questions from other people.
“What is this?”
“What did you eat?”
“Maybe you should consult this person.”
“Maybe it is something spiritual.”
In our communities, when people do not understand something, they try to explain it with the knowledge they have. Sometimes that knowledge is not medical. Sometimes it becomes blame. Sometimes it becomes fear.

My husband is a pastor, and at the beginning, people said, “Let’s pray.” We did pray. But this was also a medical condition. Munashe had spina bifida. He needed doctors, surgery, information, and support.
At three months old, he had his first surgery. Later, when he was about five, he needed another. There are still more surgeries ahead. His legs have developed weakness. There has been concern about hydrocephalus. The doctors found that the cord was difficult to detach, and in Zimbabwe, we were told that the equipment needed to detect the nerves for that kind of surgery was not available. We may have to look outside the country.

That is one of the hardest parts of this journey: knowing that help may exist somewhere, but not knowing whether you can reach it.
The doctors have been supportive, especially the private doctors. But private care is expensive. We are not on medical aid. Every consultation means finding cash, asking for payment plans, and mobilizing family support. Government hospitals have their own challenges. There are long waiting lists, even when your child is in pain and the situation feels urgent. You watch your child deteriorate while you wait for the system to make space.

Munashe’s condition affects his bowel and bladder, so he still wears diapers at six years old. He gets urinary tract infections often. He has abrupt food allergies and dietary restrictions. He cannot go everywhere without diapers and a change of clothes. There are things he wants to do that his body does not allow.
Sometimes he cannot walk for long. I have to carry him on my back.
And still, he is a happy boy. A very happy boy. He is jovial. He has energy. After his surgery, the headaches became less frequent. He has things he loves to do. He is cautious, but strong. He is still a child.

That is what I want people to remember.
He is not only a condition. He is not only the diapers, the scars, the surgeries, the hospital visits, or the costs. He is Munashe.

For a long time, we told very few people in the family. Not because we were ashamed of him, but because people did not understand. They like information, but sometimes they do not have knowledge. At family gatherings, people would ask why he was wearing a diaper. We would find other reasons to explain. I did not want my son to face stigma. I did not want people to discriminate against him or make him feel different before he was old enough to understand himself.

Even school can become difficult. Once people notice that a child is still in diapers, it becomes an extra cost. Some people become curious in ways that cross boundaries. When I am not there, they may ask him to show his surgery scars. That is not right. Children like Munashe deserve privacy. They deserve formal schooling without stigma, without discrimination, and without being treated as objects of curiosity.

Only now are we trying to educate him about his condition. He once came home from preschool and asked, “Why am I the only one wearing a diaper?” Another child had asked him. That was painful. But it also showed me that we had to begin empowering him with knowledge.
We are trying to teach him gently. We want him to understand his body, his bowel, his limits, his food restrictions, and what he needs to carry with him. But we do not want to scare him. It is a delicate path: giving him enough information to stand up for himself, without giving him trauma before he can carry it.

As a mother, I carry many things too.
People talk about the trauma the child goes through, and that is real. But the caregiver also carries trauma. The caregiver carries appointments, costs, decisions, fear, explanations, stigma, and exhaustion. By the end of the day, I am spent emotionally. Sometimes support for caregivers is just as necessary as support for the child.

If organizations want to help families like ours, they should remember the cost. They should remember that families struggle to mobilize funds for healthcare, transport, consultations, surgery, checkups, physiotherapy, and daily care. They should help connect us to resources. They should help make information available. They should help families find support groups earlier, because in the beginning, support matters so much.

If I could go back to the beginning, I would do some things differently. I would have wanted to know during pregnancy that there was a scan that could detect some deformities before birth. I did not know that then. I would have wanted surgery earlier. I would have joined support groups sooner. I think that would have helped me emotionally.

When I became pregnant again, I battled mostly with my mind. I feared the condition would repeat itself. I prayed to God. I could not share the fear easily. But I also wanted another child because Munashe was always in my care, always close to me. I wanted him to have someone to play with, someone to grow with, someone who could accompany him. Now he has a little sister, and I hope they grow together as friends.

Community support is beautiful when it is real support. It is not always money, though money is needed. Sometimes it is simply understanding someone’s story without adding blame. Sometimes when you tell people your journey, they try to give you another explanation: maybe you did not eat enough of this, maybe you did something wrong, maybe there is another side to it. But what families need is information, compassion, and people willing to listen without judgment.

That is why stories matter. Maybe my story helps another mother. Maybe I learn from another person’s story. Maybe I get strength from knowing I am not alone. Maybe someone reads this and understands that rare conditions are not demons, curses, or rituals. They are medical realities. Families need help, not blame.
I am grateful for Rare Disorders Zimbabwe. In our African context, there is not enough information about rare diseases. Many people live with these conditions in silence because they are rare and misunderstood. Some people think they are spiritual or demonic. Some turn to herbs or other solutions because they do not know where to find medical help. Organizations like Rare Disorders Zimbabwe are helping break that silence. They educate, support, and connect families like mine.

My prayer is that they can go deeper into communities, because many people need this information. Many families need to know that they are not alone.
For Munashe, I want dignity. I want privacy. I want support. I want him to go to school without being stigmatized. I want him to understand himself without fear. I want him to have access to the care he needs. I want people to see him first as a happy, strong boy.

And I want other families to know this: your story matters. Information matters. Support matters. Community matters. I hope my story can help, inspire, and educate others, and one day I can read about other similar stories and learn as well.

Poem associated with the narrative