Mum Lisa said: “Saffie’s diagnosis came as a huge shock to us, as we’d never heard of the condition or knew me and her dad Tam were carriers.
It was such a rollercoaster of a journey, but we were so relieved and grateful when we heard there was a treatment available on the NHS for Saffie.
We were told that without the treatment, she would be blind by the age of 30.
Saffie had the eye gene therapy in her first eye in April 2025 just before her sixth birthday, and in her second eye in September 2025.
“Having the treatment has been life-changing, it’s like someone waved a magic wand and restored her sight in the dark.
We’ve been able to take her trick or treating, and out to restaurants in the evening – something that was impossible before.
She’s thriving and you wouldn’t know she had the condition just by looking at her. »