RILEY Amson, 12, from Crewe, is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and its annual fundraising day, Jeans for Genes Day.

This year, Jeans for Genes Day is on September 23, and everyone is invited to wear their jeans to work or school in return for a donation.

For more information visit www. Jeansforgenesday.org.

Riley has Dravet syndrome - has numerous seizures each year and has learning difficulties and autism.

He lives with his dad Derek, 49 and mum Meely, 43, and despite his condition loves pop music, the Blackpool Illuminations and camping with his dad.

Riley was diagnosed with Dravet syndrome when he was three years old, followed by a diagnosis of autism at four.

Dravet is a type of epilepsy with seizures often triggered by hot temperatures or fever. It is also characterised by cognitive impairment, delayed language and motor skills, growth and balance issues and behavioural disorders such as hyperactivity and autistic-like behaviours.

For the Amson family, Dravet syndrome means managing around 12 seizures a year and helping Riley, who attends a special school, to get on with life despite his learning difficulties.

“Managing Riley can be difficult sometimes because he’s on the autistic spectrum and likes structure and everything to be just so,” said Derek.

“If my car is in the garage being mended, it bothers him that it’s not sat outside the house.

“When he gets home from school, he takes his uniform off and get comfortable. When I get home he tells me to get out of my work clothes, too – I think he’s worried I’m going to go back to work.

“He’s a real entertainer and loves to joke around and laugh his head off. He likes pop music, especially the chart stuff like One Direction. He’s got Bieber fever, and also likes Jessie J.”

Riley also loves lights, which provide him with sensory input.

“He loves the Blackpool Illuminations,” added Derek.

“He also loves Christmas because of the decorations and the lights – he’d love it to be Christmas 12 months of the year.”

Derek and Meely worry about their son’s future, especially because of his genetic disorder.

“There’s only an 85 per cent chance of survival into adulthood with Dravet syndrome,’ said Derek.

“You are constantly aware when they have a seizure, it could be the one that takes their life away. There’s always a sword hanging over us.”

In the meantime Derek and Meely push Riley to take on more challenges to increase his independence.

“His mum is cautious by nature, but I like to push him out of his comfort zone a bit, like going camping with him,’ said Derek.