THE ONLY BOY IN AFRICA

Imagine every few days remembering something so deep that it scares you like it's the first time you found out...

Dear boy,

When I was twelve weeks pregnant with you, the doctors could not find your nasal bone during a scan. They recommended a NIPT test to check for Down syndrome and other genetic conditions. On that same day, we also received the envelope that held the secret of your gender.

My blood was drawn, and the sample was flown to the United Kingdom. Then we waited.

For two long weeks, uncertainty hung over us.

I felt an overwhelming sense of relief when the results came back clear. Soon after, we opened the envelope and discovered that you were a boy. It was the most wonderful surprise.

A few weeks later, I was diagnosed with Grade 4 placenta previa, making my pregnancy high-risk. Despite the challenges, you continued to grow strong and healthy. Together, we made it to thirty-seven weeks.

Your birth, however, is a blur in my memory.

I suffered a severe haemorrhage, and blood transfusions saved my life.

Just fifteen days after you were born, I laid you down for a nap. A little while later, I noticed that something was wrong. You were choking.

I yelled for your dad to pick you up.

In his arms, you turned blue and stiff. For a brief moment, we feared the worst.

Doctors later diagnosed you with reflux and started you on medication. I bought a breathing monitor and soon found myself unable to sleep. Many nights, I sat awake, watching your tiny chest rise and fall, just to reassure myself that you were breathing.

Yet through it all, you were the happiest baby. Calm, content, and always smiling.

You still wake up with that same beautiful smile today.

At your six-month check-up, the paediatrician smiled and said, “This boy is lazy. He’ll need physiotherapy.”

You still were not sitting independently.

Physiotherapy began, but your development continued to lag behind. You rolled over at eleven months, army-crawled at one year, and only began crawling properly at two years old.

No one could tell me why.

We arranged for an MRI scan.

You were incredibly brave that day.

The results were inconclusive. Once again, we were left with no answers.

Around the same time, we noticed that you were not growing much taller. Everyone joked that it was because I am short.

I laughed too.

But deep down, I worried.

Between the ages of two and three, your walking remained delayed. People often told me, “Don’t worry. Every child develops at their own pace.”

I wanted to believe them.

But a mother’s intuition is difficult to ignore.

Your third birthday was especially hard for me because you still were not walking independently, although you were trying so hard. You seemed happiest when music filled the room and we danced together as a family.

Around that time, your nanny, who had become such an important part of our lives, told us she would not be returning after her holiday in Zimbabwe.

At first, I cried.

Then I realised it might be a blessing in disguise.

You started school on a Friday.

And, boy, you started walking on the Saturday.

My heart could hardly contain its joy.

Although you were finally walking, your growth remained a concern, so we consulted an endocrinologist. You underwent a growth hormone stimulation test that lasted an entire morning.

You handled it like a champion.

That same day, your neurologist suggested a broad exome genetic test. It was expensive, and your blood sample had to be sent all the way to Germany.

Then we waited once more.

On 18 February, your dad and I sat in the neurologist’s office to hear the results.

The first words she spoke were, “We found something.”

My heart sank.

This time so did your dad’s.

You were diagnosed with Okur-Chung Neurodevelopmental Syndrome.

At the time, just over four hundred people worldwide had been identified with the condition. You were the only diagnosed person in Africa.

I could not stop thinking about that.

Africa is the second-largest continent in the world, home to more than a billion people.

How could there be only one?

Perhaps the real question was how many children across Africa were still waiting for answers.

Okur-Chung Neurodevelopmental Syndrome is caused by a change in a gene called CSNK2A1, which plays an important role in brain development and many other functions within the body. Every child with the condition is different. Some are mildly affected, while others face significant medical and developmental challenges.

There is no roadmap.

No certainty.

No way to predict exactly what the future will hold.

Although we are grateful that your symptoms are on the milder side, the uncertainty remains one of the most difficult parts.

The syndrome was first described in medical literature only in 2016. Even today, many doctors have never heard of it.

In the weeks that followed, I spent countless hours reading medical journals, connecting with families across the world, and trying to understand a condition that had suddenly become part of our lives.

I share our story in the hope that another mother somewhere in Africa might recognise a part of her own journey and realise that she is not alone.

If your instincts tell you something is not right, trust them.

Keep asking questions.

Keep searching for answers.

A mother’s intuition is powerful. Sometimes, it is the very thing that changes a child’s future.

Over time, life slowly returned to normal.

The diagnosis faded into the background because you were far too busy being yourself.

The class clown.

Everyone’s best friend.

The teacher’s pet.

The light of our home.

The snack thief.

The little boy who believes he can do absolutely anything and who gives his whole heart to every challenge.

Every now and then, I remember the journey.

The uncertainty.

The fear.

And for a moment, it feels as though I have just heard the diagnosis all over again.

But those moments never last.

Because of the boy you are.

You are my hero.

I know you will go far, achieve extraordinary things, and continue to defy expectations.

You have already changed my life in more ways than you will ever know.

And no diagnosis could ever define the remarkable boy you are. ❤️

Forever your champion.

Mom.