A LITTLE boy born with a rare genetic disorder is helping to raise awareness of a major fundraiser.

It wasn’t until he was 16 months old that Dylan Rafferty from Brighton was diagnosed with a chromosome 4q deletion.

This is where there is a missing copy of part of a chromosome and has left him with autism, low muscle tone and learning difficulties with severe communication issues.

He is now aged five and he also has some physical problems, is very short for his age and does not speak.

His parents David and Harriet knew there were problems with Dylan not long after he was born and he was way behind developmentally.

However it took numerous checks and tests before a diagnosis was made.

Mr Rafferty, 35, said: “It was a shock but we hadn’t taken on board what the diagnosis really meant for Dylan in the long run.

“We went home and researched it for ourselves, which is a blessing and a curse as you come across so many horror stories.

“Emotionally it was hard. As much as I hate to say it we went through a stage of mourning the child we thought we would have.

“You don’t read any positive stories about 4q deletion.

“Nothing was well documented on the condition, there is no timeline for how it progresses and even now we are still talking about the unknown.”

Dylan started walking aged three but still has very poor balance so he wears a helmet to protect his head from falls.

Mr Rafferty said: “For us it is mainly about managing his learning disabilities and his processing.

“We still have faith he will speak but in terms of being fully cognitive and being able to reason, I can’t see that happening. That’s the reality of the condition. It’s tough at times.

“Dylan is a happy, cheeky little boy. He loves music.

“He absolutely loves dancing and pushing buggies and scooters. He has a great sense of humour. He likes swimming, artwork, theatre and puppet shows.”

The family has received a lot of support from the Sandcastle Trust, which funded a holiday this year for the family.

The organisation is one of several who will be receiving a grant from funds raised on Jeans for Genes Day on September 22.

It will use the money to develop and launch a new website and provide leaflets to support families like Dylan’s.

Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.