When Mukudzai Stands

When Mukudzai Stands

Mukudzai Gandiwa’s Story, told by his mother

Mukudzai is my second child.

I have four children altogether—two girls and two boys. My oldest is twelve. Then there is Mukudzai, who is nine and turning ten. His younger sister is six, and the youngest is only two.
For the first years of Mukudzai’s life, I did not think there was anything seriously wrong.
He was born normally. He crawled. He walked. He reached the milestones we expected him to reach.

The one thing we noticed was that his speech came a little later than expected. At the time, it did not seem like the beginning of something that would change our whole family.

When Mukudzai was around four, we began noticing more problems. He would have diarrhea frequently. We took him to the hospital and treated what we thought was a stomach problem, but it kept happening.

Then, around five years old, he became very sick.
Very, very sick.
He stopped communicating the way he once had. He could no longer respond normally. Doctors began telling us that we needed more investigations.

That was when our journey toward a diagnosis really began.

At first, we were managing the ordinary hospital costs. Then Mukudzai began having seizures. The doctors asked for an MRI. That was where money became another illness we had to manage. The MRI was expensive. We did not have the money sitting there waiting for us, so we had to find it.

It took around three months before we could afford the scan. Then came genetic testing. That took even longer. We waited around six months for the process and the result. Eventually, we learned that Mukudzai had MPS3A and that both his father and I were carriers. We finally had an explanation. But the explanation was painful.

The doctors told us this was genetic. They told us that the condition would continue to progress and that there was no treatment that could simply make it go away. The medical care we could receive was mainly about managing the problems that came with it, including his seizures. As a mother, it is difficult to hear that.

Even when someone explains genetics to you, there is still another voice inside you asking: Did I do this to my child?

I know his father carries the gene too. I know this was not something we chose. But sometimes I still feel that because the condition came through us, I am somehow part of the reason Mukudzai has to live this way.

Maybe that is why I give him so much of myself. I love all four of my children. But Mukudzai needs more of me. And maybe somewhere inside, I feel that I owe him that.

The hardest thing about MPS3A is that Mukudzai once had abilities he is now losing.
He used to go to school.
He does not go anymore.
He used to be stronger.
Now his body is becoming weaker.
He weighs around nineteen kilograms, even though he is almost ten years old.
He has become very thin.
Sometimes it feels like there is hardly any flesh on him.
Even eating has become difficult.
Certain foods upset his stomach badly, so we have learned through experience what he tolerates better. Foods like rice and potatoes seem easier for him than sugary foods and drinks.
Sometimes he can eat by himself.
But his hands are becoming weaker.
He may reach down to pick up food and then miss his mouth.
So most of the time, I feed him.

There are so many things that begin as small acts of help and slowly become your whole day. Helping him eat. Helping him stand. Helping him walk. Changing him. Watching him. Making sure he does not fall.

Mukudzai can still stand and try to move, but he does not have good balance anymore. When he gets up, his body can drift or move in a way he cannot control, and if nobody is close enough to support him, he can fall and hurt himself.

So we watch him closely. Even my youngest child understands. He is only two. He can speak, while Mukudzai no longer can. When he sees his brother getting up, he calls me: “Mom, Mukudzai is standing.”

Then I go quickly.

I support him. Sometimes I think about what that means. A two-year-old already understands that his older brother needs protecting.

All of my children know that Mukudzai is not well. They are growing up with his condition too.

My mornings have to be organized around that reality. Sometimes I feed Mukudzai before I feed my youngest child because Mukudzai needs more assistance.

Then there are the other children. School. Food. Cleaning. Laundry. The house. Everything that comes with being a mother of four. I do not have a maid. There is no extra person in the house who takes over when I am tired. There are days when I am not coping.

But there is also no option to stop.

So I continue. I used to work. I had to stop because Mukudzai now needs someone with him all the time. I cannot leave him alone. And when one parent has to stop working while a child's needs are becoming more expensive, everything becomes harder.

Mukudzai still wears diapers. As he grows, the diapers grow too. So does the price. You start thinking about things other families may never have to calculate.

What size will he need next? How much will that cost? How long can we afford it? What happens when he becomes a teenager? What happens when he becomes an adult? Those questions stay with me.

I already have pain in my chest and body from constantly lifting and supporting him. He is still a child now. But I look twenty years ahead. What happens if he still needs me to lift him? What happens if I have to take a grown man to the toilet? What happens when my body cannot do what it does now?

I would love help with toilet training if there is a way for him to learn. Not because diapers are inconvenient. Because I am thinking about his dignity. And his future. And mine.

This condition does not affect only the child who receives the diagnosis. It moves through the whole family. My husband is heartbroken too. But he has been very supportive. We care for Mukudzai together.

There is grief in watching someone you love lose things they once knew how to do. But there is also love. A lot of it. We receive support from our church, and we are grateful for the people and organizations who have tried to guide us, especially those who understand rare conditions and can tell us where to turn when we do not know what to do next.

Sometimes advice is support. Sometimes simply having someone answer the phone is support. Because this can be lonely.

There are things I wish people understood about families like ours. People may see Mukudzai and see a sick child. I see the boy he was before this condition changed so much. I remember him healthy. I remember him walking. Those things did not disappear from my memory simply because he can no longer do them. That child is still my child.

Right now, I wish he could gain weight. I wish he could eat comfortably. I wish his body could become stronger. I wish the things that hurt him could hurt him less. And I wish there were more practical support for the things that fill our everyday lives—the diapers, the food, the medical tests, the transportation, the care. People often think of rare disease in terms of a diagnosis.

But mothers live it in hours.

Morning feeding. Changing a diaper. Catching a child before he falls. Finding money for an MRI. Waiting six months for an answer. Carrying him to another room. Then doing it all again tomorrow.

I cannot tell you that I am always strong.

Sometimes I am not coping. Sometimes I am tired. Sometimes I wonder what twenty years from now will look like. But I am his mother.

So when Mukudzai stands, I stand too.

And when my two-year-old calls, “Mom, Mukudzai is standing,” I go to him. Every time.



Poem associated with the narrative