Rosyth youth faces agonising decision

pain: Cameron Newport’s family haunted by Huntington’s

A ticking time bomb is facing Fife teenager Cameron Newport next year.

Amid his 18th birthday celebrations, he will have to make the heartbreaking choice to be tested for an incurable disease which has already hit two generations of his family.

Cameron has already lost his grandad to the genetic disorder Huntington’s disease.

Now he sees mum Wendy, 43, “going downhill” and needing round-the-clock care.

Cameron, who has a younger brother and sister, will be able to choose to be tested next year.

“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,” he said.

“It can either go really well or really badly,” he added.

He was speaking to promote the annual Genetic Disorders UK’s Jeans for Genes day.

Two generations of Cameron Newport’s family have been struck down by Huntington’s disease (HD) and the 17-year-old Rosyth student does not know if it has been passed down to a third.

Cameron, who has a 50-50 chance of having inherited the condition, now has a year to decide whether or not he will be tested.

He has told his story as part of Genetic Disorders UK’s Jeans for Genes day.

He has already seen his grandfather die of the condition and his 43-year-old mother Wendy is in a care home.

Cameron, who lives with father Alex and siblings Declan, 13, and Tiffany, 12, first became aware the incurable disease was in his family when he three and his maternal grandfather was ill.

He said: “I always thought that when I got to 18 I would want to have the test to see if I carry the defective gene.

“Now I’ve have been put off from doing it. If I knew I had it, how would I deal with that?”

He said it was a huge amount of pressure on someone so young and praised the support from the Scottish Huntington’s Association.

Cameron also attends a group for those who have Huntington’s in their family.

“We are all there because we have the same thing in common, we can all relate to each other.”

Wendy showed the early symptoms when her family was young.

Cameron, who hopes to study politics or history at university, said: “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.”

She showed symptoms for years, but they did not become severe until Cameron was around 10.

His parents split up about 12 years ago and the teenager said the stress of his mother being unwell was a factor.

The children stayed with her initially but moved in with their father as Wendy’s condition deteriorated.

He said: “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.”

Wheelchair-bound Wendy needs round-the-clock care.

Cameron said: “She is well looked after.

“It’s not easy seeing her getting worse, but I know she is well cared for.”

He praised his father, adding: “He does a great job and I’m very proud of him.

“We are very lucky to have him.”

Cameron Newport faces an agonising decision. The Fife teenager knows he has a 50-50 chance of having inherited debilitating Huntington’s disease. While many children his age are worrying about schoolwork and coping with all the normal pressures of reaching adulthood, Cameron has far weightier issues to contemplate.

It is an incredibly hard situation but Cameron is already showing maturity beyond his years — we wish him well.

Cameron with his mum Wendy, who has Huntington’s disease.