Finding Light in Our New World – Courtney’s Story

Courtney was born at full term, a planned C-section baby, and at first glance, everything seemed perfectly normal. He was beautiful — and one of the first comments I would constantly hear was:

“Oh hasn’t he got lovely blonde hair.”
“I just assumed he was very fair.”

And that’s exactly the point.

So many people associate Albinism with very obvious features — white hair, very pale skin, almost violet-looking eyes. But not every person with Oculocutaneous Albinism looks the same. There are different types. Different shades. Different visual presentations.

Albinism is not one “look.”

Courtney’s appearance often led people to assume he was simply fair-haired. What they didn’t see was the visual struggle behind it. The way he held toys inches from his face. The way he stood directly in front of the television. The way he couldn’t grasp objects properly. The way, as he neared two years old, he still wasn’t walking.

I wish more people would sit and truly listen to our story before assuming they understand it.

When Concern Turned Into Answers

As Courtney approached his second birthday, our worry grew. But Covid made accessing consultants incredibly difficult. Months passed with uncertainty.

Thankfully, our GP insisted he needed to be seen.

After eye scans and assessments, we were told he potentially had Oculocutaneous Albinism based on both his appearance and clinical findings. We also discovered he had Optic Nerve Hypoplasia, meaning his optic nerves were underdeveloped.

He would be registered as visually impaired.

To an ophthalmologist, even though Optic Nerve Hypoplasia is rare, it was ‘normal’ to a Opthamologist. But to us, it felt like our entire world shifted overnight. We were thrown into medical terminology, uncertainty, and a future we hadn’t imagined — with very little guidance or support.

After years of appointments, including specialist care at Great Ormond Street Hospital, genetic blood tests finally confirmed he had OCA1b.

It was real. It had a name. And we had to learn how to navigate it. When I explain to people medical abrasions they’re amazed that I know medical terminology and really it’s quite funny.

A Mother’s Worry

Courtney also has a diagnosis of Autism. One of his biggest challenges was hiding behind me. I knew I wouldn’t always be able to speak for him. He needed confidence. He needed independence.

I found myself worrying about his future constantly and I still do now.

He absolutely loves cars. Obsessed. But he won’t be able to legally drive. Trying to explain that to a six-year-old who doesn’t fully understand breaks my heart. That’s why every Birthday or Christmas we buy him an electric ride on, just to show he can join in, early, in his own little world.

Early in the days, and still now I lie awake wondering:
What will he do when he’s older?
Will he be limited?
Will people underestimate him?

How will he travel?

He’s extremely vocal to us but in front of others, Who will be there to explain his weaknesses and strengths?

Taking a Leap Into Modelling

During this time, Courtney’s favourite human, his cousin Milo was modelling and represented by ZEBEDEE Talent, an inclusive agency celebrating diversity and difference. Milo also has Albinism and was thriving in front of the camera.

His mum encouraged me to apply for Courtney. The first time, I didn’t send the forms. Life got in the way.

But last year, something shifted. I realised Courtney needed something that built his confidence — something that was his.

So I sent the forms.

Portfolio images were arranged. His profile was written. And soon after, Courtney was officially represented by ZEBEDEE.

That moment felt huge.

More Than Just Modelling

Being represented means commitment. Part of the agency package requires a dedicated Instagram page — somewhere to showcase personality, portfolio work, and engagement.

So I created his Instagram page.

At first, it was just for modelling. But it quickly became something much deeper.

It became a place to:

• Share his journey
• Raise awareness about Albinism
• Connect with other families
• Find children and adults just like him
• Break stereotypes

Through Instagram, we’ve met families navigating the same diagnosis. We’ve seen adults with Albinism living full, successful lives. It gave us community when we once felt alone.

And perhaps most importantly — it gave Courtney representation.

Building Confidence, One Step at a Time

Courtney has now had many castings. He absolutely loves being in front of the camera. The nerves disappear. The hiding behind me fades.

He stands tall.

Like starting any career, the hardest part is gaining experience. You’re told you need it — but how do you get it without being given a chance?

Then he landed his first job.

And he smashed it.

He has this natural, serious expression — a smouldering look photographers adore. He listens, he poses, he understands direction. Watching him work is something I’ll never forget.

Now when he hears about models, his face lights up and he proudly says:

“Mummy, I’m a model.”

And he says it with such confidence.

The only down side to the modeling is vocal castings, Courtney isn’t able to read or write yet apart from his name, so if he is expected to read a script, he’s unable to and I worry in case this jeopardise him being accepted on a job. Although this has pushed him behind but he’ll get there! He just loves to pose without the speaking for now, but it’s all about confidence building. One step at a time!

Changing the Narrative

Modelling has given him:

• Self-esteem
• Independence
• A voice
• Confidence
• Belief in himself

He understands his Albinism. He knows it’s rare. He calls his skin ‘special skin’ and even though several times during the day he has sun cream on even during the winter months, or wear his sun hat. It’s so drummed into his routine since there were speculation, he knows no different. If he sees Braille, he’ll explain what it is. He understands that there are others like him.

And I truly believe this journey has helped him find his own feet.

My Wish

I don’t want people to stereotype.
I don’t want assumptions based on hair colour.
I don’t want people to think they understand Albinism just because they’ve seen one image online.

There are different types. Different abilities. Different journeys.

I just want people to sit. To listen. To understand.

Children like Courtney don’t need pity.
They need opportunity.
They need inclusion.
They need acceptance.

His world may look different — but it is full of light.

And he is rewriting what that difference looks like.

So Courtney and like so many other people in this world with Albinism look have beautiful blonde hair, red hair, brown hair blue eyed boy with glasses, but in reality his uniqueness is more than the eyes can see