Kelly and Mark Rowlinson with their third child, four-year-old Mia. Mark was diagnosed with motor neurone disease six years ago.
Kelly and Mark Rowlinson with their third child, four-year-old Mia. Mark was diagnosed with motor neurone disease six years ago. Kari Bourne

Heart-wrenching battle

MARK Rowlinson knows what it is like to grow up without a father. His greatest fear is that his children will do the same.

The Mountain Creek father-of-three has motor neurone disease: a neurological disorder which affects the nerves controlling voluntary muscle movement, causing gradual paralysis.

After riding a roller-coaster of emotions upon diagnosis six years ago, he took control of his situation and retired from work to spend time with his family, travel and strengthen his body to stave off the effects of the disease for as long as possible.

But one thing that he has not been able to set in place is a future with his kids Georgia, 11, Finn, 6, and Mia, 4.

"A long time ago, I got past the fear of dying. The thing that is concerning is not being around for my children," he said.

Mr Rowlinson was just a boy when his own father went missing in a fishing accident at Scarborough.

"I know that there's a good chance that Mia won't remember much, if anything," he said.

"That's why I thought whatever time I have left, I want to spend with family."

Mr Rowlinson is one of an estimated 1400 people living in Australia with MND.

Like many, Mr Rowlinson and his wife, Kelly, said they did not understand what the disease was when he was first diagnosed.

"I had heard the name but that was all," he said.

"Of course, I came home and jumped on the internet and my whole world crumbled around me."

A builder with his own business, Mr Rowlinson said the first symptom he had experienced was some weakness in his right hand after a skiing accident.

The disease moved from his right hand and arm to his left, then through his legs, and is now into his chest.

He can still stand but uses a motorised wheelchair to get around and relies upon his wife for all of his needs.

"Frustration is my greatest enemy," he said. "I've always been a hands-on person so it's very difficult to sit back and have to ask for help and for someone else to do the simplest of things."

Once a great talker, Mr Rowlinson is now self-conscious about sometimes being difficult to understand and has become shy about going out in public where people might not understand his condition.

"It would be nice to have a greater awareness of the disease," he said.

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