Obituary: Gordon Aikman, political campaigner and MND campaigner

Born: 2 April, 1985. Died: 3 February, 2017, aged 31

Gordon Aikman has died at the age of 31. Picture: Ian Georgeson

The shock diagnosis of motor neurone disease (MND) propelled behind-the-scenes political aide Gordon Aikman to a new role which saw him become one of the country’s most formidable charity campaigners and fundraisers.

Mr Aikman was just 29 and working as director of research for the Better Together side during the 2014 Scottish independence referendum campaign when he was given his “death sentence”.

Sign up to our daily newsletter

The i newsletter cut through the noise

A former member of the Scottish gymnastics team as a teenager, he spoke movingly of the bombshell diagnosis which would turn his life upside down in a Scotland on Sunday article in June that year.

Recounting his appointment with a consultant neurologist at Edinburgh’s Western General, he wrote: “He asks what I know about MND. ‘Very little,’ is my honest answer. ‘It is a rare, progressive and debilitating disease,’ he explains, ‘that attacks the brain and spinal cord.’

“I don’t believe what he is telling me. I shake my head in disbelief. ‘In time,’ he says, ‘it will lead to weakness, and muscle wasting’, affecting how I walk, talk, eat, drink and breathe.

“How could this be? My symptoms seemed so innocuous. I had noticed my hands feeling numb; I was beginning to struggle with tying shoelaces and buttoning shirts. I thought it was my circulation: something a few blood tests and a pack of pills could sort. How wrong I was.

“‘Why me? Why now?’ I ask.”

Despite being diagnosed with the terminal illness, Mr Aikman decided to continue to work for the “cause” after cutting out commuting and the arduous early starts and late finishes.

But he was also driven by a new passion – fundraising for vital research into the neurodegenerative condition and campaigning for better provisions for those living with the illness. Through his website, Mr Aikman raised hundreds of thousands of pounds for investment in research.

He also set out a list of seven things he believed the Scottish and UK Governments could do to help find a cure and transform care for MND patients.

Following lobbying by Mr Aikman and others, the Scottish Government doubled the number of specialist MND nurses across Scotland.

MSPs also backed changes to the law that would give people at risk of losing their voice as a result of a medical condition the right to access voice equipment on the NHS.

His charitable work soon received plaudits. His successful lobbying saw him receive an honorary degree from the University of Edinburgh in the summer of 2015.

In the same year, he scooped a British Empire Medal in the Queen’s Birthday Honours list.

Mr Aikman also lived long enough to find out about a research breakthrough funded by the “ice bucket challenge”.

Despite being criticised by some as a stunt, the viral campaign raised $115 million (£87.7 million) and funded six research projects, one of which led to the discovery of a new gene linked to MND.

He also found love and married his partner, broadcast journalist Joe Pike in March 2015.

Writing in his Sunday Times diary, he said: “I know my marriage will be shorter than most. There is no cure for MND. Half of people die within 14 months; I am now eight months in. Does it make it any less worthwhile or meaningful? Of course not. I may be dying but I am lucky: I have found love. For that I am deeply grateful.”

He would also write candidly about coming to terms with his own looming death.

“My outlook and priorities have changed,” he said. “I spend more time with friends and family than ever before. I love watching my niece and nephew grow and develop.

“I live in the moment. I don’t put things off. Joy is found in different places. Looming death keeps everything firmly in perspective. Every day I am reminded life is short.”