Macular disease can change a whole family

Carol had never even heard of macular disease until her grandson George was diagnosed with Stargardt at just six years old. She’s shared her story.

“It was a very, very big shock. I don’t think I slept for a month. I’d go to bed, and a question would pop into my mind, and I’d have to get up and Google it.

“George used to sit right in front of the telly, and I would say, ‘Move back. You’ll have square eyes.’

“Looking back, we all think that was the start of it. But I didn’t have any inkling that there was anything wrong with his eyesight. I just thought that’s what all kids do.

“Then my daughter Sarah took George for a routine eye test, and they told her there was something wrong. It was just unbelievable, and devastating, for all of us. How could this happen to a little boy?

“I said to my daughter Sarah, 'Shall we sell the house, to get money to treat him?'

“We didn’t know that even if we did find the money, there is currently no treatment for Stargardt disease.

“We haven’t been able to see George as much as we’d like to this year – we live quite far away from my daughter and her family, and of course the coronavirus meant we couldn’t visit as often as we normally do.

"George is a happy boy and plays like any other seven-year-old, but his sight is deteriorating quickly and we can already see the difference in him.

“Recently, when we were able to visit, I could see the way he looked at me with his head to one side because he couldn’t see much. I have to admit, it was heartbreaking.

“I know that there has been a lot of progress with genetic research, thanks to donations made to the Macular Society. I am truly hopeful that research could find the treatment that rescues at least some of George’s sight.”

Thanks to our amazing members and supporters, the Macular Society is funding vital research into macular disease. Each year we get a little closer to a cure. Just two months ago, work started on a Society-funded project into a possible cure for Stargardt disease using gene editing.

Together, we can stop this from happening to any more families.

Our Advice and Information Service is here for people with macular disease, their friends and family. Just call 0300 3030 111 or email help@macularsociety.org