A TIDWORTH couple say their lives were “turned upside down” after their sons were diagnosed with a rare genetic disorder.

Carly and Aubrey Burton’s sons Kian and Isaac both have Zellweger Syndrome, which is an hereditary, recessive disorder. One in 50,000 children are born with Zellweger Syndrome (ZSD).

Friday (September 22) marks Jeans for Genes Day which raises money for Genetic Disorders UK to support families. This year, a grant from money raised will fund a fun day for families affected by Zellweger Syndrome.

Kian, five, is on the mild end of the Zellweger Spectrum and suffers with hearing loss while Isaac, two, is more affected and has a developmental delay.

Kian was born in Germany where Aubrey, 29, was stationed in the Army. He met all the usually development milestones but Carly, 26, says they grew concerned about his hearing.

When he was 14-months-old the family moved back to the UK and found out he had glue ear - a common condition where the middle of the ear becomes filled with fluid. It was later found that Kian had permanent hearing loss and had to have hearing aids when he was two.

The family say the cause of the hearing loss was unexplained until his younger brother Isaac was born in 2014.

He struggled to gain weight and had weakness in his muscle tone. Isaac was later referred to a specialist metabolic team in Bristol for genetic testing and at five months he was diagnosed with ZSD.

ZSD can affect most organs of the body and can cause loss of muscle tone, hearing loss, vision problems, liver dysfunction, and kidney abnormalities. It often results in severe, life-threatening complications.

Children severely affected are not expected to live past infancy but those more mildly affected have a better prognosis.

“When we were told the devastating news, our whole world was turned upside down and we had so many questions,” said Carly, who is a nursery assistant. “We were so shocked. We were initially told that children with the disorder don’t live past infancy.

“I cried and cried. I thought he was fine, he just wasn’t gaining weight. It was a really hard time and telling the family was so difficult.

“People didn’t understand the severity of the condition and that there is no cure and no treatment. We took every day as it came.”

Kian also tested positive for the disorder.

“It was a huge shock for us to get this news,” said Carly. “But Kian is on the extremely mild end of the Zellweger Spectrum and he has no other symptoms except his hearing loss.”

Carly added: “He [Isaac] is behind with his speech and understanding, but he is doing so well and his doctors are really pleased with him.

“Isaac is the happiest little boy I know and his favourite thing is to dance.”