A ROSYTH teenager is living with a “ticking time bomb” as he faces a decision whether to find out if he is likely to inherit a debilitating brain condition.

Huntingdon’s Disease has affected two generations of Cameron Newport’s family and, on turning 18, he will be able to decide whether to have genetic testing to discover what is in store in the future.

His mum, Wendy, 43, suffers from the disease – as did his maternal grandfather – and, after being diagnosed seven years ago, she now lives in a care home.

Huntingdon’s Disease is a progressive neuro-degenerative disorder and causes brain cells to die off. Early symptoms include mild tremors, clumsiness, irritability, mood changes and depression.

As the disorder progresses, symptoms include severe personality and behavioural changes, depression, difficulty eating, speaking and walking and involuntary limb movements.

Huntington’s Disease usually progresses, deteriorating over a 10-25-year period from when it first appears before the person eventually dies from it. During the condition’s later stages, the person will be totally dependent and need full nursing care. There is no cure and treatment is only to ease symptoms.

“I always knew mum was ill,” said Cameron, 17, who lives with his dad, Alex, and siblings Declan, 13, and Tiffany, 12.

“She’s been ill so long, it’s all I can remember, so it wasn’t a shock when she got the diagnosis in 2010.

“HD wasn’t a secret in our family but we didn’t talk about it much. For her, she lived with the fear of seeing her dad like that. It was evident mum had it too. She would act erratically so it raised suspicions. The symptoms got a lot worse and now she is going downhill.”

While reaching 18 is a major milestone for most young people, for Cameron it will mean he can choose whether to have tests done.

“I always thought that when I got to 18 I would want to have the test to see if I carry the defective gene,” he said. “Now I have been put off from doing it. If I knew I had it, how would I deal with that? I’ve seen my mum get worse. To know that I had it too, it would be devastating. I am undecided about what to do. My brother and sister are too young to think about it yet.

“It is a lot of pressure as a young adult. You want to know and you feel the weight on your shoulders but if the test is positive it’s always going to be at the back of your mind that you will become ill. It can either go really well or really badly.”

The music and sports fan, who attends school in Edinburgh, spoke of his experience in an effort to raise awareness of children’s genetic disorders with the UK children’s charity, Genetic Disorders UK, and their annual fundraising day, Jeans for Genes Day, which takes place on Friday.

The Scottish Huntingdon’s Association is one of the charities to benefit from the fundraiser and will receive a grant for an annual summer camp for youngsters living with HD in their family.

As well as attending the camp for the last 10 years, Cameron also takes part in a weekly support group for teenagers who have Huntingdon’s in their family.

“The support from the Scottish Huntington’s Association has been brilliant,” he added. “They have helped me for years. I have a youth worker who comes to see me once a month, more if I need to speak to him.”