Milo’s story
15 December 2025
Diagnosed with albinism at only five days old, Milo has grown into an eight-year-old with resilience and confidence. He has also stepped into the world of modelling and inspires other children with albinism.
When Milo was born, the second he laid on his mother chest, she knew he had albinism.
I asked the midwife, ‘why is his hair white? Is he albino?’ She laughed at me saying, ‘no don’t be silly he’s perfect.’
Layla, Milo’s mother
Milo had difficulties breathing so he was seen by a paediatrician. Again, Layla asked the same questions.
At three days old, Milo was still in the NICU and had not yet opened his eyes. When a new doctor examined him, they were concerned about his complexion and called in the local ophthalmologist.
Finding a diagnosis
At five days old Milo was seen by an ophthalmologist, and it was confirmed he had albinism and was likely to be blind.
This was an extremely bittersweet moment for me. On one hand I wanted to scream ‘I told you so’ but on the other I was heartbroken.
Layla, Milo’s mother
What is albinism?
Learn more
Albinism affects the production of melanin, the pigment that colours skin, hair and eyes. It’s a lifelong condition, but it does not get worse over time.
It can affect eye sight, as melanin is involved in the development of the light-sensitive tissue at the back of the eye, called the retina. Eye problems such as short- or long-sightedness, astigmatism, light sensitivity, nystagmus, and squint can be linked with albinism.
Milo’s parents felt they were left with not enough information on how to support Milo other than to just protect his skin and eyes. They also quickly realised, as it’s a rare condition, it’s not always well understood.
The effect on Milo’s sight
At around four weeks old, Milo developed nystagmus which became noticeable as it caused involuntary eye movement.
His photophobia was also severe which meant he would often sit in darkness and avoid outdoor places.
These conditions are common for people diagnosed with albinism.
Initial experience at Moorfields
Six months later, Milo had his first appointment at Moorfields.
Moorfields has given us confidence in the medical team working with Milo, they understand albinism and what Milo needs. They are guiding us to know how to support Milo to go and thrive.
Layla, Milo’s mother
At the first appointment, Milo saw the ophthalmologist who completed genetics testing and confirmed he had severe sight loss.
The team also confirmed he had oculocutaneous albinism, horizontal pendular nystagmus, photophobia and astigmatism in both eyes.
Milo also saw the developmental paediatrician. They further explained his visual needs and introduced the family to available support services.
We left feeling overwhelmed but heard and felt like he had a team who understood his condition.
Layla, Milo’s mother
After, Milo started wearing glasses and sunglasses when going outside.
Continuous care at Moorfields
Milo is currently seen at Moorfields twice a year.
The genetics clinic is usually a long 3-5 hour day. During these visits, he is given eye drops and digital images are taken of his eyes. Milo loves looking at these images after. The consultant also talks through the results and any issues Milo might be having.
Milo usually gets a new glasses prescription which means he has the opportunity to do his favourite part, picking out new glasses.
He is also seen at the low vision clinic. Milo has been going there since he started school, it has helped him to see the same staff each visit, including Priya Bhambra.
Milo also has ADHD, this often means he struggles to sit still in the chair. Priya and the staff help by being patient, sometimes sitting on the floor with him to do his eye test and giving him jobs to keep him engaged and focused.
This has built a positive experience of visiting the hospital for Milo.
Milo always leaves feeling happy, as do we as his parents. Moorfields has given Milo confidence is his vision, seeing adults working at the hospital with sight loss shows him that nothing can hold you back.
Layla, Milo’s mother
Milo today
Milo still hates bright days and chooses to be inside as light hurts his eyes. He can get frustrated when he can’t do things like making straight lines or secure his Lego in the right place because he cannot focus on what he is looking at.
We focus on teaching Milo that not all things he can do but we can make adaptions and adjustment so he can do them. Being blind really does not hold him back.
Layla, Milo’s mother
Despite this, Milo has been resilient, adaptable, works hard in school and is managing to keep up with his peers. He has extra support and adjustments made for him.
He has developed lots of confidence advocating for himself. He understands his disability and knows he is different to his friends but he is proud of that.
Layla, Milo’s mother
Milo has started cane training and will start learning how to read braille soon.
Milo also models for a company who only work with people with visible differences. This has led to the opportunity of working with high street brands and inspiring other children with albinism.
Advice for other parents
Layla shares it can be hard adjusting to the new life, and that it’s okay to feel sad.
She previously felt guilty about her genetics causing Milo’s sight loss. However, she finds comfort in knowing that’s just part of who he is and that he is an amazing boy.
