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You - 2021-10-10

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E WORDS NO THER WANTS TO HEAR…

REAL LIVES

PHOTOGRAPH: DAN KENNEDY

condition that leads to blindness. There’s no treatment and no cure. ‘I sat on my bedroom floor and broke down. I was hyperventilating as quietly as I could so the kids couldn’t hear me downstairs. It just didn’t seem real.’ The following week, Evie’s diagnosis was confirmed. Evie, now 16, says, ‘I’d had an entire day of tests and I was tired, so I wasn’t actually listening when the doctor broke the news. I remember seeing my parents crying and being like, “Oh, what did I miss?”’ Evie began to grasp how drastically her life would change when she returned to school with an ipad so she could take photos of what was on the board and zoom in on the writing. ‘I was immediately teased and that’s when it sank in there was something really wrong with me,’ she says. As a mum, how did Victoria feel about the bullying? ‘Violent. In my head.’ Four years on from that terrible evening in 2017, mother and daughter are sitting in a West London café laughing and teasing each other. Victoria comes from one of the wealthiest families in Ireland – they made their fortune via paper packaging ‒ but struck out on her own, starring in films such as About a Boy. Evie is charming and gentle, and happens to have the most stunning green eyes. You’d never know she is perceiving the world differently to the rest of us. ‘My retina cells are dying at a rapid speed,’ she explains calmly. ‘I’m losing sharpness in my central vision and also my tolerance of light. In bright places I have to wear sunglasses. I see a lot of yellow lights; it’s like there are fireworks in the middle of my vision all the time and I have to look through them.’ I’m sitting right next to her, but she says she can see only dark shapes where my eye and nose are. ‘As a parent, one of the most appalling things is being told you can’t fix what’s wrong with your kid,’ Victoria says. In fact, there’s no way even to slow down Evie’s condition. ‘I had a year of being up at 3am every night, googling, thinking, “There must be something [a solution].” You’re absolutely convinced it’s out there somewhere – stand on one leg, sing “Kumbaya”, stick a candle in your ear – but there’s nothing. It took me about two years to be able to say out loud what Evie had without choking up.’ But more was to come. While Stargardt disease ‒ which affects approximately one in 10,000 people ‒ is genetic, unluckily both Victoria and Evie’s father Doug Baxter (the couple are divorced) carried the gene. It meant their younger two children, Ridley, 14, and Flynn, 12, would need to be tested. ‘Waiting for those results was the longest of my life. When I got the call to say they didn’t have it I fell to the ground. I told Evie first, because I knew for her it was such a 50:50 thing between having company if they did have it and being grateful if they didn’t. But she just said, “I’m so pleased they don’t, because I feel so lonely and I don’t want them to feel that way.”’ No one can be sure how long it will be until Evie loses her vision completely – sight tends to plateau before suddenly worsening. ‘I have days when I have good eyes, and then the next day my sight will have completely dropped. And once it’s gone, it’s gone,’ Evie says. ‘Usually, when there’s a drop we literally drop too – on to the floor, have a big cry,

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