A TIDWORTH family has spoken out to raise awareness of a disease which can cause severe, life-threatening complications.

Unknown to them, Carly and Aubrey Burton both carry the mutated gene which causes Zellweger Syndrome and both of their sons Kian, six, and Issac, three, have inherited the genetic disorder.

Now, ahead of Jeans for Genes Day which raises money for Genetic Disorders UK, the couple are speaking out about the disorder.

As both Carly and Aubrey carry a defective gene each child they have will run a one in four chance of inheriting the disorder.

ZSD can cause loss of muscle tone, hearing loss, vision problems, liver dysfunction, and kidney abnormalities. There is a range of severity on the Zellweger spectrum, with children severely affected not living past infancy while children more mildly affected have a better prognosis.

Kian was born in Germany where Aubrey, was stationed in the Army, met all his milestones on time, if not before.

He however lost his hearing at the age of two but the cause of it was not immediately clear until his brother was born in July 2014.

Carly said: "We were shocked and upset about Kian’s hearing loss but we just learnt to get on with it and had great support from the audiology team.”

From birth, there were concerns over Isaac. It was at first feared he had Down's Syndrome, though this was quickly disproved. However, he struggled to put on weight or muscle tone.

After a series of tests and scans, Isaac was referred to a specialist metabolic team in Bristol for genetic testing. At the age of five months the diagnosis came back – it was the genetic disorder Zellweger Syndrome.

Nursery assistant Carly, 26, said: “When we were told the devastating news about Isaac, our whole world was turned upside down and we had so many questions “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.”

After Isaac was diagnosed with Zellweger Syndrome the family was advised to test Kian, who also tested positive for the genetic disorder.

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

While there is no treatment available, Isaac takes prescribed vitamins and docosahexaenoic acid, and is on a strict diet. His lifestyle is improving as he now can walk unaided, though can only walk short distances, and struggles to speak more than single words.

This year, a grant from money raised for Jeans for Genes will fund a fun day for families affected by Zellweger Syndrome.

Carly added: “We’ve been to all the fun days. They are amazing, it’s fantastic to meet other families with children with Zellweger. They know what we are going through and some of them are so knowledgeable. This year all the families will stay in a hotel and scientific experts will join us. It is invaluable for parents.”

Jeans for Genes Day is this year being held today (Friday). For more information, go to www.jeansforgenesday.org.