Retinoblastoma - Katie Elliots story – Vision Foundation

Retinoblastoma – Katie Elliots story

When Katie Elliott passed her driving test first time, she burst into tears.

Anyone would be emotional at this achievement, but for Katie, who lost her right eye to cancer aged four, it was also a milestone that disproved those who doubted her potential – including her childhood bullies.

The 20-year-old student from near Glasgow was diagnosed with retinoblastoma, a rare type of eye cancer affecting the retina (the eye’s light sensitive layer). In the UK, one in 20,000 children are affected, with 40-50 cases diagnosed each year.

“I’d no idea if I could drive, or if I needed extra mirrors,” says Katie. But she judged distance and blind spots without such adjustments: “Passing first time was a big achievement I didn’t think I’d be able to do – I’m very proud of myself.”

Discovering the diagnosis

Katie, who studies finance at college and works part-time as a supervisor at a golf club, cannot remember much about her diagnosis.

Her mother, Gillian, noticed changes in the colour and shape of her daughter’s pupil and took her to an optician who suspected an infection. When the eye became painful, Gillian took her to a doctor. Specialists discovered a one centimetre Grade E tumour (tumours are labelled A to E, A being the very low risk group and E being the highest risk group) and surgeons could not save Katie’s eye.

The year-long treatment, including chemotherapy, involved stays at seven different hospitals in London and Oxford. Katie remembers playing computer games in a hospital playroom and having her prosthetic eye fitted 15 years ago (“it wasn’t fun”). She has memories of tubes attached to her chest which she nicknamed “wigglies”.

Katie’s family worried about the impact on her life, especially on her beloved horse riding. Her mother, an equestrian coach who taught Katie to ride, encouraged her to spend time with her pony, Phoebe. Katie describes the horse, who died this year, as “the constant that saw me through”: “I’d had Pheobe since I was three, so her role in my recovery was so important; she was the hope that I needed to get better.”

Infection risks meant Katie could not have direct contact with horses during chemotherapy. So Gillian drove her to the stables to see Phoebe through the car window.

Living with sight loss

As for coping with sight loss, Katie says she cannot remember having full vision: “I look about me more than other people and I can walk into stuff sometimes – I might not see how close I am to a wall. Apart from that, it doesn’t affect me that much.”

Katie believes her hobby helped her depth perception: “I began riding in shows at six. Other people didn’t think I’d be able to compete but I proved them wrong – that gave me a boost.”

Katie, who has won competitions such as events at the East Kilbride agricultural show a few years ago, says visiting the stables and her “yard family” helps her relax.

While she had the unconditional support of family and friends, playground comments included questions about why her eyes looked different and being called “weird”.

A comparison with the Monsters Inc. character Mike Wazowski left her in tears: “Being young, I’d no idea what to say or do, or how I should feel. The more comments I got, the more I felt self-conscious. I broke down at the Monsters Inc. one, but in fact that was last major comment I got.”

At secondary school, Katie says there were fewer offensive remarks and and they affected her less “because I’d had them for so long”. She had adjustments like bigger text and today she magnifies her phone or computer screen and wears sunglasses to help with light sensitivity.

Katie, inspired by TikToker influencers like Jarrett Stod who discuss retinoblastoma, uses her social media as a platform. Her empowering videos are emblazoned with messages such as “be bold, be strong, be you”.

The burgeoning campaigner is confident enough to be photographed without her prosthetic, something that led to a modelling contract: “I just woke up one day and thought ‘I want to take pics without my prosthetic’.” Katie applied to inclusive model agency Zebedee Talent and plans to take up modelling opportunities during college holidays.

Katie says: “Now bigger brands are using models who have disabilities or visual impairments and that spreads awareness – that’s what I want to do.”

For example, when she applied for her part-time job, she told colleagues her disability might make her a “bit clumsy” and explained she had a prosthetic eye – they said this was “cool”.

Talking about disability is key, she says: “If people spread awareness about sight loss then more people will start to understand and allow workplaces to be more accessible.”

Katie, who has shared her story with US-based charity Know the Glow and the Childhood Eye Cancer Trust, is also planning a disability awareness session for young riders at her stables.

This is where her ambitions lie: “My goal is to help people young and old feel more confident in themselves and in their bodies, and to help prevent bullying.”

Confidence, she says, is vital “Your disability makes you more special – my message to anyone diagnosed with retinoblastoma is to be true to yourself and love yourself the way you are. Your imperfections are what makes you unique.”


Katie Elliot looking into the camera, in black and white