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Scottish Independent Media

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Brave Marc's battle with rare nerve disorder

Story by Claire Elliot

 

 

BRAVE Marc Hurst is like any active 12-year-old boy who loves to kick a football around with his friends and ride on his bike.

 

But underneath his happy-go-lucky exterior, lies a daily battle against a rare and painful condition, that could leave him with multiple tumours growing along his nerves and skin.

 

His mother, Julie Wilson, from Ardersier, near Inverness, was told her son had neurofibromatosis - a genetic disorder that causes cells to grow out of control - when he was just three years old.

 

He now has to have MRI scans every three years to check for tumours, which can grow anywhere in the body including the brain, spine and face.

 

They are normally non-cancerous and usually start to appear in adolescence and increase in number with age.

 

But there is no cure for the condition, which can leave Marc’s skin so sore that he is waiting to see a psychologist to help him cope with the pain.

 

Despite his illness, the primary seven pupil, whose muscle tone is also underdeveloped, has never let it stand in the way of his childhood.

 

Marc now plans to complete a sponsored bike ride this summer to raise money for the children’s ward at Raigmore Hospital, Inverness, where he is a regular patient.

 

“He’s just a wee star,” said Mrs Wilson, 36.

 

“He has to put up with a lot but he just deals with it brilliantly.

 

“He would put some adults to shame by how well he copes with everything.

 

“But it is very worrying. Every time he goes for his scans you think, ‘are they’re going to find something this time?’.

 

“We got his latest results back last month and I had a sick, horrible feeling in my tummy that they were going to find something and they didn’t.

 

“It was such a relief that they came back clear. I was just over the moon.

 

“But I’m always checking, if I notice a difference, even the least little thing, to make sure he‘s fine. It can be a nightmare.”

 

She first knew there was something wrong with her son when he was a baby.

 

He was always sick after feeds and failed to put on weight, despite being born a healthy 7lb 6oz.

 

Mrs Wilson said: “He started to look really scrawny.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“We were back and forward to the hospital every month because he wouldn’t put on weight.”

 

Eventually after three years and a visit to a geneticist, he was diagnosed with neurofibromatosis, or NF1.

 

It can vary in severity from person to person and leave patients with a wide variety of problems from learning difficulties to skin irritations.

 

Mrs Wilson also has the condition but her symptoms are so mild she never knew she had it until her son was diagnosed.

 

In Marc’s case, even a common cold or sick bug can leave him so ill, he has to be admitted to hospital and put on a drip for days at a time.

 

He also struggles to put on weight and, from the age of three until he was 10, he was fed through a tube in his stomach.

 

And walking for any length of time can leave his skin and the nerves in his feet aching.

 

Marc now takes eight tablets a day to keep the condition in check and drinks supplementary milkshakes to build up his body mass.

 

Mrs Wilson, who also has a daughter, Courtney, 13, however, said: “Because it affects the nerves, painkillers don’t work. You have to keep his mind off it by getting him to do other things.

 

“He’s waiting to see a physiologist because that kind of therapy can help him deal with the pain.

 

“But he’s always smiling and doesn’t let anything get in his way.”

 

He goes to mainstream school, and like any lively 12-year-old boy, loves playing football with his friends, riding his bike, and playing computer games.

 

But having spent his life in and out of hospital, he has now decided to give

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In photo is Marc Hurst with his mum Julie Wilson