World Sight Day takes place on the 14th October this year, with a theme that you should #LoveYourEyes. Loving your eyes can come in many forms – for instance – attending all your eye appointments or looking after your eyes by wearing sunglasses. At CHECT, we also want to celebrate eyes in all their forms – whether it’s an enucleated eye, a prosthetic eye, an eye with low or no vision, an eye unaffected by cancer, or an eye that once had retinoblastoma. To mark World Sight Day, we are sharing the story of Olivia Deane, who had retinoblastoma and is now an advocate for celebrating differences.
My name is Olivia Deane and I am 24 years old from West Sussex.
When I was 12 years old I was diagnosed with retinoblastoma. I always saw little black floaters, but I can’t remember seeing them when being young, I’m unsure when exactly I started to notice the floaters, however I never complained about them as I thought this was a normal thing that everyone saw. I received chemotherapy and then went into remission for a little while. Unfortunately, it returned much more aggressively, and I had my eye removed at the age of 14.
Retinoblastoma has affected me in so many ways. Having my eye removed at 14 was a scary thing at the time. I felt different and thought so many times ‘why me?’. Everyday got easier, but it is something that is part of you. When taking out my prosthetic eye I always thought this is me… my true self. I really started to open up about my experience with retinoblastoma and how I feel about living with a prosthetic eye. It was hard to get used to having a prosthetic eye as it’s different to having two eyes, I felt uneasy taking pictures as my eyes looked lazy and I just couldn’t get used to it. I felt I was hiding from the world. I really felt it helped speaking about my experience. I plucked up the courage a couple of years ago and took my prosthetic eye out for a picture on my social media to really show the world the real me, I felt it was such a weight lifted off my shoulders. I actually felt beautiful in the picture, compared to how I used to feel when I took pictures with my prosthetic eye in. The picture reached so many people; people who had been through the same and also lots of people with body differences who we’ve stayed in contact and supported each other over Instagram. It’s been so amazing to see and speak to such inspirational people, it’s really inspired me to love myself and I should never be ashamed of my beauty spots. I truly believe we are all individually beautiful and it deserves to be seen.
Although I wear my prosthetic eye from day-to-day when travelling, I like to take pictures and videos without it. I feel it defines the real me. I like to have a choice in how and when I feel comfortable. I never usually leave it out for longer than a day.
Since posting pictures regularly, I have stayed in contact with some amazing people with prosthetic eyes. Some who have had retinoblastoma too, some who have had different cancers, accidents and more. I realised not everyone feels as confident as I do now and how some haven’t fully opened up about their story before. I felt so strongly about holding an awareness day so we could all meet and they can tell their stories too. I feel there’s never enough awareness and if we can help make a change and build confidence up with everyone who has differences, to help prevent bullying and normalise differences finally would be such an amazing thing to experience and do. I organised a venue, photographers and a videographer to film the whole day and make it into a documentary. My plans are to go to schools, many schools and show the documentary to children/teenagers and explain my journey and allow other people to explain their story on living with a body difference. I want to educate and help children gain more knowledge on disabilities and differences so this can prevent bullying as people will be more understanding and able to approach the subject. Everyone deserves to feel happy, comfortable and included.
Elijah Byrne at the awareness day organised by Olivia
The day went successfully, it was so amazing to meet such powerful, strong, inspirational people! It has helped me so much and we all connected and opened up which was lovely. The documentary is currently being edited; I’m hoping for it to be out in the next few months so watch this space!
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Katie Piper – an inspirational presenter who was attacked with acid, causing her to suffer from burns and blindness in one eye, found my Instagram and we have stayed in touch ever since; she has always been my inspiration. She has helped so many people including me. I went on her podcast and spoke openly about my journey with having retinoblastoma. You can find it on Spotify (Extraordinary People: Livi Deane). She also sent such a lovely message to everyone who attended the awareness day, this will be shown in the documentary.
From doing the podcast with Katie Piper I was afterwards messaged by an agency called Zebedee Talent. They have recently signed me and I am now modelling for them, it’s been all surreal and just an absolute dream. Ever since I had my eye removed I thought it would hold me back, but I was so wrong. It has helped me achieve things I never thought I would have achieved, I believe Katie Piper when she told me that God will never give you something you can’t handle.
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Olivia featured in Vogue Portugal
Since modelling, I have recently been in Vogue Portugal September 2021 issue and many more exciting shoots. Some I can’t mention until it’s out.
Olivia modelling in Vogue Portugal
I really am at my happiest with life now. I want people who have been through the same as me, or similar, to know that things will be ok. Things will work out and life has its paths, some we don’t understand but it will always lead us to where we’re meant to be. Staying positive and speaking good encouraging words to yourself will always help.
You can find me on Instagram here: @livi.deane
If you’ve been affected by retinoblastoma and want more support on body confidence, our support workers Lesley and Sarah are here to help. You call them – Lesley 07471199809/ Sarah 07526594762 or email them at: support@chect.org.uk