Reuben sadly passed away at home five days before Christmas 2021, aged two years old. His family would still like us to share their story, as told by mum Sophie before he died.

Reuben was born with a condition that causes his brain to slowly deteriorate. It’s so rare that they haven’t got a name for it and there have only been 17 cases registered worldwide.

Eight years ago, our daughter Olivia was born with the same condition. At that time they couldn’t give us any answers about why it had happened. She died when she was just eight months old, and because they were still learning about the condition they told us, ‘lightning doesn’t strike twice.’

But when we had Reuben, we knew straight away that he had the same condition as his sister. He was so beautiful, but it was crushing to look at him because we could see the similarities in his features. And we knew what life was going to be like for him – we’d been there before with Olivia.