Chromosome 22q12 Encodes Merlin to Inhibit Tumour Growth — I Lack Merlin, Not Magic.

I was twelve years old when I was diagnosed with Neurofibromatosis Type 2 (NF2). My dad had it, and with a 50% chance of passing it on, my family always knew it was something we needed to watch for. Still, nothing could have prepared us for how my life would unfold.

A Childhood Marked by Tumours and Treatment

My first MRI revealed a tumour growing on my vestibulocochlear nerve. I had just turned thirteen when I began my first twenty‑eight sessions of radiation. Within months, I became so ill that I had to leave school. While other kids my age were navigating adolescence, I was navigating hospitals, fatigue, and the frightening world of neurological tumours.

At eighteen, I underwent two excruciating surgeries to remove a tumour from my spine, followed by another month and a half of radiation targeting two more tumours—one on my brainstem that threatened to paralyse me from the neck down, and another that had grown on my remaining hearing nerve.

By the time I was nearing thirty, yet another tumour appeared this time on my trigeminal nerve, bringing unbearable neuralgia. More radiation followed.

This is what NF2 does: We grow nerve tumours. Again, and again.

Now at thirty‑six, tumours are scattered throughout my head and along my spine. There are so many that my neurosurgeon calls it “cherry‑picking”—we watch and wait until one becomes too dangerous to ignore. Then we cut, radiate, or consider long‑term chemotherapy drugs.

Every “cherry” changes the direction of my life. Yet being diagnosed so young means this is the only life I’ve ever really known.

Learning to Live With Uncertainty

Living with NF2 teaches you that nothing is guaranteed, not your eyes, your ears, your voice, your movements, or even your breath. Growing up with a disease that can take any of those things from you forces constant adaptation. It also builds a profound appreciation for everything you still have.

And I am grateful—for so much.

What Equity Means in My Story

My greatest privilege was being born into a family with medical aid. I genuinely don’t know if I’d be alive without it. At the very least, I know I would be completely deaf by now.

Even today, the ability to work full‑time and afford medical aid is a privilege not everyone with a rare disease can attain. And it is something I have to maintain for the rest of my life, no matter how sick I become.

In South Africa, living with a rare disease is not just a lifelong medical journey—it’s a lifelong financial burden.

Your access to care, treatment options, and even your survival can look completely different depending on whether you rely on private healthcare or state facilities.

And that, to me, is the most unfair and heartbreaking part.

Day‑to‑Day Life: Finding a Place Where I Belong

I now work remotely for a Finnish company called Deafmetal, which creates beautiful accessories and solutions for people who are deaf and hard‑of‑hearing. For once in my life, I am valued because of my lived experience—and not forced to work around the challenges of hearing loss, vocal cord paralysis, or chronic illness.

The world is still profoundly inaccessible to people with disabilities. So being in a workplace where I can show up as my full, authentic self and be celebrated for it—has improved my health and happiness in ways I never expected.

I always tell others:

If you can choose what to do with your life, find something you love because of who you are, not in spite of it. That is where you will grow. That is where you will thrive.

Hope, Strength, and the Gift of Perspective

Positivity in my life has everything to do with gratitude.

By the time my dad was my age, he had been declared unfit to work. He was completely deaf, half his face and neck were paralysed, he had lost an eye, and he lived with unbearable pain and tinnitus for twenty‑five years. One brain surgery followed another. There were countless complications. And yet he made it to sixty. His suffering ensured that I was diagnosed early. His misdiagnosis meant that I received timely treatment. His experiences became my “gift.”

Growing up watching him survive taught me to hold on tightly to the things I still have. I’ve learned that if you cling too long to what you’ve lost, you miss out on the beauty of what remains. Mourning every change would mean living permanently in the past and I have so much future left in me.

My perspective—my hope—comes from him. And for that, I’ll always be grateful.