The family of a boy with a rare hereditary condition are helping to raise awareness of genetic disorders as part of Jeans for Genes Day.

The parents of 10-year-old Ted Grove-Welsh spoke in support of the charity Genetic Disorders UK and its annual fundraising campaign.

It runs this week and encourages people to attend work in jeans.

“It's just a great charity,” said Ted’s mum Zoe, a primary school deputy headteacher, of Peatmoor.

“It does great stuff but not many people have heard of it, and we want to raise some awareness,” she added.

Ted was born with the rare disorder aromatic amino acid decarboxylase deficiency.

It affects the way signals are passed between certain cells in the nervous system. Ted is unable to sit, stand or walk and only has limited verbal communication.

“You never anticipate that your little one is going to have a rare disease,” said Zoe.

The family got involved with the charity after the Sandcastle Trust, one of the Jeans for Genes Day 2019 grant charities, organised a trip for Ted to meet Santa at Legoland with brother Miles, 15 and sister Emelia, five.

“It was a magical experience for Ted and created amazing memories for the whole family,” said Zoe.

Ted’s condition only affects six children in the UK and between 130-150 in the world.

“It has had a big effect on the family,” said dad Sven, a motor technician.

“All the visits to the hospital, trying to get a diagnosis and dealing with the condition as it manifests itself over the years,” he said.

“We had a lot of emotions,” added Zoe.

“Our eldest son Miles, was only four at the time and was desperate for a little brother. We tried to explain he was so poorly. It was desperately hard and exhausting.”

Ted recently went to Poland for gene therapy, becoming the first person in the UK to undergo this treatment. Since then his condition has started to improve.

“Ted has the most infectious smile, and now that he’s 10 we want to give a bit back, and make other people smile wearing their jeans to work,” Zoe added.

Jeans for Genes Day runs until September 20. Donations can be made at jeansforgenesday.org.