Plymouth boy, 5, has rare genetic illness most doctors know nothing about

Dude's parents Kerrie and Tony told ITV News' Jacquie Bird they hope doctors will remember his face while trying to find a cure.

The family of a five year old boy from Plymouth have pledged to raise awareness about the rare genetic illness that will claim his life.

Dude Sutton was diagnosed with 4H Leukodystrophy two years ago, but doctors told his parents Kerrie and Tony the condition was so rare they knew little about it.

They'd taken him to the doctors after noticing he was unsteady on his feet. He now has hand tremors and his eyesight is failing. His parents have been warned that he will eventually lose the ability to walk, talk and even smile.

Kerrie told ITV News West Country: "It doesn't faze him. He knows what he's got, if you ask him he tells you what he's got, but he doesn't know what's going to happen. We're super proud of him, every day he does something to amaze us."

Kerrie and Tony have taken Dude to a specialist in Amsterdam to confirm his diagnosis and a convention in the USA for the condition.

They're appealing for more awareness about 4H Leukodystrophy.

Kerrie said: "Without fundraising there's going to be no money and then no one will be able to afford to do research into it.

"In America they've got a mouse model now, so they are doing research. That's another reason why we took Dude so obviously they can look at his face so if something did come about, they could think, hang on a minute, Dude would be a good candidate for that."

The family have pledged to spend every day making memories with Dude. Last summer they went on a big family holiday in their converted bus to Spain and Portugal.