Bride who lost her sight at 17 reveals her wedding day was the ‘happiest and saddest she’s ever been’ after holding out hope she’d be able to see – and blindfolded her guests so they could share her emotions

• Lucy Edwards from Birmingham lost her sight at the age of 17 
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A bride who lost her sight before her wedding day let her new husband and wedding guests ‘walk in her shoes’ by blindfolding them as she walked down the aisle.

Lucy Edwards, 27, from Birmingham, began losing her sight at the age of 11 and six years later went completely blind.

She met her partner, Ollie Cave, 27, a VFX artist, in 2015 before losing her sight and the couple got engaged in June 2018.

When planning their wedding, Lucy wanted her husband-to-be and their guests to experience their ceremony in the same way she would – so blindfolded them all as she walked down the aisle.

At the end, Ollie felt her wedding dress to take it all in before taking his blindfold off to lay eyes on his wife-to-be.

Lucy (pictured left), who lost her sight at 17 due to a condition called incontinentia pigmenti, asked her groom Ollie (pictured right) to ‘walk in her shoes’ and wear a blindfold during their wedding ceremony 

Lucy, a content creator and broadcaster, said: ‘I didn’t think I’d be a blind bride when I met Ollie.

‘I was the happiest I’d ever been on my wedding day, but also the saddest.

‘I only told a few people about the blindfolding – there was a consensus about it not being traditional.

‘But they were shocked at how sensory it was. By the end of the main ceremony, everyone’s blindfolds were wet with tears.’

Lucy was rushed to hospital at eight years old after a routine appointment with an optician.

She was diagnosed with incontentia pigmenti at four years old – a rare genetic skin condition which can cause a person to lose their vision.

She originally lost sight in her right eye at the age of 11 – but, by 17, she was totally blind.

By this point, she’d been dating her now-husband, Ollie, for a matter of months – but Lucy realised she wouldn’t be able to see her wedding day.

The pair were wed at Kew Gardens in South West London where they hired out three conservatories for £12,000

So this is the moment that I blindfolded all my guests, and I walked down the aisle on my #wedding day… Myself and Ollie thought it would be a really good idea to blindfold him as well, as when I got to the end, and my dad passed my hand to Ollie he was able to feel my wedding dress in the exact way that I felt it when I first had it on. This was such an important experience for us both even though Ollie isn’t blind, but we thought it was really important for him and all of my guests to experience what it’s like for me in the most important moment of our life so far. As you can see me, Ollie and my dad are really struggling to hold it together. It was such an emotional moment and one that I will remember for the rest of my life. I am so lucky that I have a husband that accepts me for exactly who I am my disability and everything. The whole me. I walked down the aisle to arrival of the birds by @The Cinematic Orchestra, as this is the song at the end of one of my favourite films, the Theory of Everything. Stephen Hawking has been a massive role model in my life and I always cry at the end of that movie at his final monologue. I really believe in the philosophy that we are all just small beings and atoms on this massive planet and Stephen taught me that you can love and hate your disability equally, and that’s a truly beautiful thing. It’s a sense of self that I’ve had to work on and I felt truly independent when walking down the aisle with my dad to this song. This is quite an emotional and raw moment to share with you guys, but I thought it was so important as it’s not a typical way that a bride walks down the aisle but it was my way. Just remember you are so special and you don’t have to follow traditions if you don’t want to. Our wedding day is about you and the person that you love and every moment needs to feel right for you. Thank you to the amazing harpist @Amie True Music (gifted) for playing the main melody along with the 3D audio speakers from Delta Live that we had up the aisle so we could have immersive sound. Ollie made an arrangement so I could hear where I was. Every step I took the music evolved and so did the flowers! A truly blind experience!

‘I was sighted when we first got together,’ Lucy said.

‘But there was always this looming prospect that one day I’d lose my vision.

‘I had to tell myself it was a possibility – but I still thought, “Nope. It’ll never happen”. I had hope.’

She set the wedding date for August 31, 2023, and, in 2022, she decided she didn’t want her friends and family to see her walking down the aisle.

While friends and family worried she’d be missing out on her big moment – she thought it was more important for them to experience the ‘bitter sweetness’ she’s felt for her sight loss over the last 10 years.

‘My family were concerned I’d be missing out on my moment,’ she said.

Lucy still had her vision when she first started dating Ollie, but there was always the looming prospect that she could lose her sight 

Lucy set the wedding date for August 31, 2023, and, in 2022, she decided she didn’t want her friends and family to see her walking down the aisle

‘Which would’ve been everyone seeing me walking down the aisle.

‘Grief hits you in different ways – and it was important for them to experience that, when I’ve been living it every day.’

Lucy still grieves the loss of her sight – 10 years on. But she tries to remain as positive as she can.

She said: ‘One of the gifts blindness has given me is the ability to see.

‘I tried to look at all the positives of the day – I’m not about that negative energy.

‘My dress was really tactile – and we found a really accessible wedding venue.

‘I could feel the glitter under the chiffon of my dress – and each individual flower.

‘When I heard the echoes in the venue – I didn’t even need to see it.’

Lucy still mourns the loss of her sight ten years later- but said the condition has given her the ability to truly see 

Lucy said that she tries to look at the positives each day- rather than dwelling on the negatives of her condition 

Lucy and Ollie hired out three conservatories in Kew Gardens for £12,000 – and looked into a tour guide who provides audio descriptions for tourists.

They made sure their wedding would be as accessible as possible in other areas, too.

She said: ‘Kew is so sensory and flat, with great access for disabled people.

‘The doorway to the main ceremony was wide, which provided manual wheelchair access.

‘I worked closely with a brand to make sure there was lots of signage all around the venue – which had QR codes that gave people audio descriptions.

‘Our place setters were written in Braille for the meal – and we had lots of sensory food.

‘We adapted the canapés so they wouldn’t spill on my white dress – by glazing them in sauce instead of providing dips.

‘We even had molecular cocktails shipped off from Spain.’

Lucy made sure her guests were blindfolded as she walked down the aisle to ‘Arrival of the Birds’ – part of the ‘Theory of Everything’ film score.

Lucy and Ollie made their wedding as accessible as they could- wit place setters written in Braille for the meal – and had lots of sensory food

Ollie said the moment he blindfolded himself during the wedding ceremony was the most emotional he’s ever been 

‘As I walked down the aisle, the instruments got to a crescendo,’ she said.

‘You could smell the flowers, too – it was quite overwhelming for everyone.

‘I think people were shocked at just how much they could hear.

‘It was a sad moment – but really poignant. I’ve never felt two conflicting emotions so deeply.

‘My chest was heaving – but at the same time, I was absolutely buzzing. I had butterflies because I was marrying the man I love.’

What is incontinentia pigmenti?

– Incontinentia pigmenti is a condition that can affect many body systems, particularly the skin. This condition occurs much more often in females than in males

– It’s characterised by skin abnormalities that evolve throughout childhood and young adulthood

– Many affected infants have a blistering rash at birth and in early infancy, which heals and is followed by the development of wart-like skin growths

– In early childhood, the skin develops grey or brown patches (hyperpigmentation) that occur in a swirled pattern. These patches fade with time, and adults with incontinentia pigmenti usually have lines of unusually light-colored skin (hypopigmentation) on their arms and legs

– Other signs and symptoms can include hair loss (alopecia) affecting the scalp and other parts of the body, dental abnormalities (such as small teeth or few teeth), eye abnormalities that can lead to vision loss, and lined or pitted fingernails and toenails

Source: National library of medicine 

Ollie, Lucy’s new husband, said: ‘The moment when we all blindfolded ourselves was one of the most emotional I’ve ever been.

‘My blindfold was already getting a bit wet before the first bridesmaid made it down the aisle but it was when I heard our dog’s, Miss Molly’s, bells on her collar that I properly broke down.

‘It meant that my Lucy was on her way and I don’t think I’ve ever been so excited.

‘We really wanted to make this moment something that was equal for the both of us and I wouldn’t have ever changed the way we did it. For that brief moment, everyone was experiencing my Lucy’s world.’

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