Kayley Storey, 33, was just 15 when she was diagnosed with rare Stargardt disease, an inherited eye condition affecting an area of the retina known as the macula and reducing central or detailed vision.
Heartbreakingly, when her daughter, Ivy, was born last December, she could not see her face clearly.
The professional artist, who auditioned for the X Factor in 2009, says she relied on her HGV mechanic husband, Ryan, 35, to describe her favourite TV shows to her – but she was desperate to see her baby girl’s face.
Then on August 22, Kayley, from Kent, says she had the best birthday ever, thanks to a pair of special glasses which enabled her to finally see Ivy properly.
‘It was magical,’ she says. ‘I was lent the glasses to try, but if I can get a pair, it’ll change everything. I can watch Ivy in her Christmas plays and do her homework with her.’
Kayley first realised something was seriously wrong with her eyes when she was a teenager. She went to the doctor when she could no longer see the board clearly in lessons.
‘I noticed my teachers’ faces disappearing, so I went to the optician,’ she says.
‘My first two tests were inconclusive, then I was diagnosed with Stargardt disease. It was a real shock for my whole family, as we have no history of it.’
Left unable to focus on objects or people, Kayley found the condition very difficult to deal with.
‘It’s like someone has poured a big tub of glitter in the middle of my eye,’ she says.
‘It’s really isolating. If I’m in a room full of people, I don’t know what’s going on or how people are reacting.’
Despite her difficulties, she was still determined to achieve her dreams and, aged 20, auditioned for X Factor singing Unchained Melody by the Righteous Brothers.
‘I started singing because it was a way of expressing myself,’ she says.
‘If I hadn’t been diagnosed with Stargardt disease I would never have started singing in front of people. I guess, in a way, I can’t see the audience, so I don’t get scared.’
Then, in November 2018, she met Ryan on a dating app – tying the knot under lockdown restrictions in September 2020, when she was 25 weeks pregnant.
But, despite the couple’s love story, Kayley was hesitant about having a child and potentially passing her condition on.
‘The condition is genetic,’ she says.
‘I was apprehensive about having children, as I was worried about them having the condition. But speaking to Ryan I realised it was going to be OK.
‘He said that if that if we created someone like me then it was worth having even more people in the world.
‘From that moment, I knew I wanted a family with him.’
Giving birth to baby Ivy, in December 2020, Kayley was over the moon and accepted that she would never see her newborn’s face in detail.
‘I had prepared myself for not seeing Ivy clearly,’ she says. ‘But I was nervous taking care of her, as they’re such delicate humans at that age.
‘Ryan did everything at first, but then I adapted, and it became second nature.’
But on her 33rd birthday, Kayley was over the moon when tech start up company, OXSIGHT lent her a pair of their special Oynx glasses, so she could see the world in detail for the first time in years.
The smart glasses cost £1,499 plus VAT – although low vision aids are VAT free for those eligible. They work by digitally enhancing the wearer’s remaining sight.
‘It was honestly amazing to see my loved ones in the room,’ she says.
‘It was just a breath of fresh air to be able to communicate with them properly to see exactly what was going on.
‘I just couldn’t stop staring at Ryan and Ivy’s blue eyes. I think having this disability in life can feel quite isolating. It’s hard to read a room of people, so having the glasses, I felt like my old self was back in the room.’
Now Kayley is determined to own a pair of the special specs as soon as she can.
‘I think about the future and how different it would be with these glasses,’ she says.
‘I’d be able to help with Ivy’s homework, or just watch a film with my family.
‘I currently paint how I see the world. My work is very abstract, but I think it’s a way of expressing my vision loss. Even seeing colours from far away is tough.
‘At the moment, Ryan describes what’s on TV to me as we’re watching it, so I know what’s going on.
‘But if I can get a pair of these glasses when they go on sale for the future, I’ll be able to watch Ivy at her Christmas play or cook easily.
‘I love being a mum it’s so amazing, and it really was the best birthday present to be able to see my little girl’s face for the first time.’
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