Don denim to support children like Dylan

As a result of the rare disorder he has autism, hypotonia (low muscle tone) and learning difficulties with severe communication issues and on-going physical issues.

On Friday (September 22) people in Brighton and all over the country can help children like Dylan, and their parents, by simply putting on a pair of denim jeans.

Jeans for Genes Day, is organised by The UK children’s charity Genetic Disorders UK and their annual fundraising day, invites everyone to wear their jeans to work or school in return for a donation.

Children with Dylan’s genetic disorder, 4q deletion, can suffer developmental delay, learning difficulties, low muscle tone, short stature, large heads and seizures.

It took 16 months for Dylan to be diagnosed with this rare genetic disorder.

His father David, 35, a learning technologist for the NHS, said: “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.”

Since then Dylan’s parents have been helped by The Sandcastle Trust, which supports families affected by rare genetic conditions.

David 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. The Autism Spectrum Disorder diagnosis has been incredibly positive. It is easier to explain and it has given us a new social network.

“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. We have had great support from the Sandcastle Trust. They are enabling us to go to Centre Parcs on holiday this year – something that we’re really looking forward to.”

The Sandcastle Trust will this year receive a grant from funds raised on Jeans for Genes Day, to develop and launch a new website and provide leaflets to support families like the Rafferty family who are coping with a rare genetic disorder such as 4q deletion.