I want life not death, says stricken father

A man who suffers from Motor Neurone Disease (MND) has written passionately of his overwhelming desire to live when doctors presented him with the option of death.

Writing in The Irish Times, Simon Fitzmaurice explained that when the possibility of switching off his life support machine was raised, a passion to stay alive ‘infused’ his whole body.

In the article he wrote: “I am full of hope. The word hope and MND do not go together in this country. Hope is not about looking for a cure to a disease. Hope is a way of living.”


Mr Fitzmaurice explained he has a “tube up my nose and a tube down my throat”, for feeding and breathing which prevents him from speaking. He is also unable to move his arms or legs and uses text messages to communicate with his family.

He described one occasion when he was repeatedly questioned about why he would want to have a home ventilator – a machine which assists his breathing but is not advocated by the primary support organisation for MND sufferers in Ireland.

He wrote that he believed the doctors were asking the question “because they have made a decision about my standard of living”. He said: “I think that to them, it is inconceivable that I would want to live.”

But Mr Fitzmaurice declared his driving force for life is: “Love for my wife. Love for my children. My friends, my family. Love for life in general. My love is undimmed, unbowed, unbroken. I want to live.”


Mr Fitzmaurice is aware that he does not “speak for all people with motor neurone disease”, but he is clear that he did not want to follow the course of most MND sufferers in Ireland – where patients are “sedated, helped, counselled, eased into death”.

He also said that he has nothing against the consultants at the hospital who ‘believe they are doing the right thing’.

In conclusion Mr Fitzmaurice wrote: “It’s not important you know everything about motor neurone disease, about the specifics of the disease, about what it’s like to have it.

“It’s only important that you remember that behind every disease is a person.”

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