A Sutton child with a rare genetic disorder is helping raise awareness for children with similar conditions by getting people to wear their jeans.

Ethan Fisk, 8, was diagnoses with Williams syndrome soon after birth, a condition caused by a missing piece of DNA on chromosome seven affecting many parts the body which causes heart problems and the development of elfin features.

Next month, he is taking part in Jeans for Genes Day, a national event which raises funds for charities supporting children with genetic disorders by encouraging the public to wear a pair of jeans to school or work in return for a donation.

One of the biggest sources of support for Ethan, his brother and his parents has been a small charity called the Williams Syndrome Foundation.

Ethan's dad Kris Fisk said: "We received our formal diagnosis three days before the charity hold an annual picnic at Hyde Park, London.

"When we arrived, we walked into the friendliest group of children and adults with Williams Syndrome.

"We got to meet so many incredible families who were either going through the same thing or who had been through it already.

"The charity has made a huge difference to our lives. They've arranged access to doctors and behavioural psychologists.

"Every two years, they run a convention. Appropriate activities are planned for the Williams children in a safe environment.

"Presentations are planned throughout the weekend that you can go to if you want to, it might be about primary education, secondary education, advances in medical treatment.

"You have the world's leading experts standing in front of you and you can ask them questions. It's not just about the individuals but the families also.

"They offer support and counselling for siblings.”

Aged just two Ethan underwent two open hear surgeries to repair the aortic vale on his heart.

He has severe learning difficulties and anxiety, eats very little solid food and only drinks milk.

Despite the difficulties he faces, Ethan is known for his warm and open nature.

"Ethan has a big beaming smile," Kris said. "He'd walk into a room full of strangers and think every one of them was a new friend. He'll hold their hands and give them a cuddle."

Kris gave up his job working in law enforcement intelligence to be Ethan's full-time carer and is now a self-employed personal trainer.

"No matter what I will be there for Ethan, but that doesn't mean it isn't very difficult at times,” Kris said.

“Raising a child with a genetic condition means there are days when we feel mentally and physically exhausted.

"People underestimate how constant it is. I can't sit Ethan down with a book or in front of the telly and say 'Just give me ten minutes'.

"There is no chance that is going to happen. We love him, but life can be a struggle”