“Our son has macular disease, there was a chance our daughter would get it too. We hoped the odds would be in our favour”Posted: Wednesday 08 November 2023
When George was diagnosed with macular disease at the age of seven, his mum Sarah and dad Ollie knew there was a one in four chance their daughter could be affected too.
But, as Farrah wasn’t showing any symptoms, they put the thought to the back of their mind. Until one day, she told Sarah she had kept seeing funny things out of the corner of her eyes.
“I thought I’d better book her an eye test, just in case,” Sarah said.
“On the day of the appointment, I had this feeling and said to my husband Ollie, ‘I don’t know why, but I’m really nervous about going for this eye test’. He reassured me it would be fine. But of course it wasn’t.”
Sarah described the experience as ‘pure déjà-vu’. “It was like being with George at that first eye test,” she said. “The optician was showing Farrah the letters, and she was saying ‘I can’t see that’, and I thought ‘Come on Farrah, you’re not showing any symptoms – how can you not see?’ I had tricked myself into thinking everything would be ok. But we were going through it all again.
“When I saw the scans with a bullseye on each macula, I just started crying right there and then. Farrah caught on pretty quickly and she started crying too. And then I thought ‘Please get it together, for her.’”
Sarah took Farrah to the toilet and took a minute to chat to her about the news they’d just been told.
She said: “I told her it wasn’t the end of the world, that she was a VIP now and already knew so much from George. By the time we got home, it had sunk in a bit. But then I had to tell Ollie. He was very upset, and we spent the next day together just processing.”
But there is still hope for Farrah.
Sarah said: “At the hospital appointment, the last thing the consultant said to me was ‘She can still drive.’ Farrah is still above the legal limit to drive.
“It would be a huge thing if a cure was found before her eyesight gets any worse, so she might actually be able to drive a car. If the progression could be stopped now for Farrah and George, it would make such a difference to both of them but particularly Farrah, as she’s in the early stages. It would be a game-changer for her.”
Sarah added: “George is such a good role model for Farrah. She sees him doing so well and it helps her. It makes her think that actually she can do this. George is still riding his bike, which frightens the heck out of me, but Ollie’s there with him and even though George can’t see that well now, he’ll get on his bike and for me it’s terrifying, but he loves it. And it makes Farrah think she can keep doing the things she loves.
“I’m so proud of them both. And I know what I’ve got coming now. It’s so difficult, but I’m prepared. I’m ready for it.”
Sarah, Ollie, George and Farrah have shared their story as part of the Macular Society’s Christmas appeal.