Man with MND hopes children’s books are something his kids can be proud of

A children’s author has told how a Motor Neurone Disease (MND) diagnosis did not prevent him discovering a new-found talent for children’s booksAlmost three years ago, 50-year-old Andrew Knowlman received the devastating news that he had developed the neurological condition, for which there is currently no cure.

The businessman had begun to become concerned about his health after developing muscular difficulties and finding his balance was increasingly impaired. By the autumn of 2014 he was no longer able to lift his left foot properly and tests the following spring confirmed he had MND.

“I cried and cried,” he told the i newspaper, when describing his reaction to the news. “Disbelief. Me? Devastating. Life already changed before because my dear children could see that something was wrong. Progression is noticeable by week. Sometimes steady, sometimes faster. I cry every day.”

Even as his health has deteriorated, Andrew has managed to find a new vocation as a children’s author. He also puts his writing skills to good use on a blog which has allowed him to document the challenges of living with the condition day-to-day.

“I felt I was doing something the kids could be proud of,” Andrew said of his books, which are produced using “eye gaze” technology. “People say that you’re still the dad, but in many practical ways I can give my children a lot less. In story writing, I found a new skill, and it was enjoyable to be in the much-talked-about flow.”

Sarah Boyce, the illustrator who has collaborated with Andrew, described how he had overcome formidable obstacles to get his words down.

“It was such a challenge for him from so many angles: the physical placing of each letter with his eyes. It was painstaking work – positioning his chair in front of his computer, in the days before it was mounted on his chair, so his eye would hit the right place on the keyboard screen. He couldn’t ask for adjustments, he had to find a way for his carers to understand what he needed.

“All through the process Andrew was in charge, driving it forward, whilst also being able to have a laugh, sometimes at his own expense.  He has a single-mindedness which I have rarely seen and which served him well on this project.”

His wife Jane added: “It’s an inspiring story for people, in many ways.

“Because if you imagine your life changing so dramatically, like it has done for Andrew, apart from the family, and because he had time that he never really had before, he found that he had this talent for writing. It was always there, but he never used it. But it’s amazing that this talent for writing came out.”

  • At Almond Care our staff have the specialist training required to support those living with Motor Neurone Disease (MND). For further information about our services, please contact us today.