Natasha Ray’s story
6 August 2025
Natasha Ray has been a patient at Moorfields since she was eight-weeks old. After being initially misdiagnosed, her condition was correctly identified thanks to Moorfields. She is now twenty-one, studying a masters in paediatric and mental health nursing, and volunteering to give back to Moorfields!
Initial childhood diagnosis
From the moment Natasha was born, her mother sensed that something was different about her.
At first, her mother’s worries were dismissed by doctors. But during the six-week postnatal check-up, it came to light that her suspicions were correct. Something was wrong with Natasha’s eyesight.
After the check-up, Natasha was referred for private testing, where she underwent a series of assessments, including a blood test, an EEG (electroencephalogram), an ultrasound, and a detailed vision exam to help determine the cause of her symptoms.
My parents were really worried about the tests. My mum thought maybe I had a neurological problem or a severe disability that would potentially be life limiting.
Natasha Ray, Moorfields patient
Natasha was diagnosed at eight weeks-old with ocular albinism.
What is ocular albinism?
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Ocular albinism (OA) is a rare type of albinism that mainly affects the eyes.
Patients with OA have a reduced amount of melanin, which can lead to eye problems. This is because melanin is involved in the development of the retina, the thin layer of cells at the back of the eye.
It can cause poor eyesight, and can be linked to conditions such as:
-Astigmatism, where the front part of the eye (the cornea) is not perfectly round, causing blurred vision
-Photophobia, where the eyes are sensitive to light
-Nystagmus, where the eyes make involuntary and movements from side to side or up and down, which can cause poor vision and balance problems
-Squint, also known as strabismus, where the eyes point in different directions
Shortly after, Natasha was referred to Moorfields, and has been under Moorfields care ever since.
Natasha’s parents were told that they would only know the extent of her vision loss once her eyes had finished developing—typically around the age of seven, eight, or nine.
Navigating childhood with a diagnosis
As Natasha grew up, her parents felt a sense of relief seeing her navigate the world without bumping into things.
When she was two years old, they took her skiing in Austria. The glare from the snow caused her to feel disorientated due to her photosensitivity. After that experience, they chose not to ski again.
Although Natasha knew there would be some things she couldn’t do, her vision never stopped her from enjoying a normal childhood.
Natasha’s school was very supportive, and when she was seven she gave a presentation to her class about her eye condition. This helped her classmates to learn about her condition and be more understanding.
Growing up at school, I always just wanted to fit in. I felt kind of different. But now I think ‘yes, I am different, so what! What even is normal anyways?’
Natasha Ray, Moorfields patient
Discovering and correcting the misdiagnosis
When Natasha was sixteen, she took part in research.
As part of the testing, Natasha, her brother and parents had a specific genetic panel blood test. A year later, a mutation in Natasha’s SLC38A8 gene was discovered.
This meant she did not have ocular albinism.
Her new diagnosis did not have a name, but is characterised by foveal hypoplasia, a condition where the central part of the retina, called the fovea, does not develop properly. The condition has all the same symptoms as ocular albinism.
The study was carried out by researchers at Moorfields Eye Hospital, UCL Institute of Ophthalmology, Great Ormond Street Hospital, National University Hospital and The Francis Crick Institute including Dr Vijay Tailor-Hamblin and Professor Mariya Moosajee, whose work has been supported by Moorfields Eye Charity.
Without this research, I would still probably be walking around with the wrong diagnosis. It doesn’t necessarily change much for my current prognosis, but if they know the actual gene that is causing me a problem, that’s a fundamental step in then trying to do further research in terms of creating a treatment or cure.
Natasha Ray, Moorfields patient
Natasha today
Although there is still no cure for Natasha’s eye condition, she remains positive, and has appointments at Moorfields twice a year.
She feels fortunate that her condition is stable and not progressive.
No glasses, surgery or medication can correct my vision. There’s no treatment or cure. Nothing can be done unless there is more research in the future.
Natasha Ray, Moorfields patient
In 2024 she had surgery at Moorfields to treat her squint. A squint is the common name for ‘strabismus’ which is the medical term used to describe eyes that are not pointing in the same direction.
Due to her photophobia, she still needs to wear sunglasses the majority of the time.
Having previously taken part in research, she is keen to do so again.
I’m a bit of a medical nerd, so of course research is super interesting to me, but it’s also just so important. Advances made through research can massively improve people’s quality of life, or even be life changing. So many things improved just within those sixteen years from when I was born to when that genetic testing was done, I can’t begin to imagine what the next few years could hold.
Natasha Ray, Moorfields patient
Volunteering with Eye-YPAG
Natasha first met Dr Vijay Tailor-Hamblin in person at a research event. He also recognised her name from the research paper he wrote. He invited her to be part of the Eye-YPAG advisory group, which is supported by Moorfields Eye Charity.
What is Eye-YPAG?
Learn more
Eye-YPAG is an advisory group for young people with eye or vision conditions. As part of the group, it allows young people to learn about research, to provide feedback on research proposals and participant information materials, and to share ideas.
Since joining the Eye-YPAG, she has played a hands on role, providing feedback on leaflets for young people and sharing her insight on what works, what doesn’t, and how to make them more age appropriate and engaging.
I’m excited to be able to make a difference and use my experience to make a positive impact. I like helping people. So that’s why I think I’m so keen on doing anything that I can.
Natasha Ray, Moorfields patient
Volunteering at Eye to Eye
Natasha joined our cheer squad at Eye to Eye 2025. Cheering on all the participants as they arrived at the finishing line.
My favourite part of Eye to Eye was the atmosphere. Seeing the excitement of everyone crossing the finish line.
Natasha Ray, Moorfields patient
Natasha shared that she is keen to volunteer at Eye to Eye again.
This feels like just the beginning of me getting involved and giving back. I’m excited as well. Like when I have kids later down the line, even if they’re not visually impaired, I’ll bring them for a fun day out at Eye to Eye, and tell them it’s the hospital that helps mummy.
Natasha Ray, Moorfields patient
Advice to others
Natasha’s advice to her younger self and others is to not care what people think, and you don’t need to feel obliged to explain yourself to everyone.
Looking back, what I would advise to my younger self when I was like school age is to stop worrying so much about what people think, I promise absolutely no one is paying that much attention. Also remember that there is no ‘normal’, everyone is unique so try to embrace your difference. It’s what makes you interesting and fun!
Natasha Ray, Moorfields patient
