Although some children with this diagnosis survive well into adulthood, Alex’s mum, Bess, has the heartbreaking knowledge that many more don’t.

“I’ve learned a lot about PMD since my son was diagnosed as a baby,” she said.

“I know how it stops the flow of signals between his brain and his body, and why Alex struggles to communicate, despite having so many wonderful things to say.

“But what I don’t know is how much more time we will have together. We have been told by specialists that only a handful of boys with PMD have made it through adolescence. So, his dad, Mitch, and I make the most of every precious moment with Alex.