Gordon humbled by astonishing support as he reveals devastating diagnosis
The moving story of a young Kirkcaldy man recently diagnosed with Motor Neurone Disease has inspired people to raise more than £34,000 for the charity which supports those affected by the condition.
Gordon Aikman, the director of research at the Better Together campaign, told The Press he has been ‘blown away’ by the generosity and support he has received since his story was published in our sister paper, The Scotsman, and other national newspapers last week.
The 29-year-old, who was born in the town and attended Kirkcaldy High School where he was Head Boy, said donations started coming in almost immediately after his story went online on June 15. It has since been viewed more than 38,000 times in a week.
Gordon, a former member of Kirkcaldy Gymnastics Club, said: “I had only raised a few hundred £s before the article was published but after midnight people started making donations through the night.
“It reached £24,000 in 24 hours. The most anyone has raised so far for MND Scotland is £47,000 so I’m keen to break that record if possible. Lots of friends have been in touch with their plans to raise money from bake sales, marathons, Tough Mudder, sponsored walks etc.
“It will all be spent trying to find a cure, but raising money is just part of what I want to do.
‘‘I am also campaigning for change so the next generation of MND patients don’t have to go through what I have.’’
Among the changes he wants to make include getting the UK Government to double investment into MND Research to find a cure quicker, making it illegal for local authorities to charge terminally ill patients with conditions such as MND for personal care and to have the Scottish Government fully fund seven specialist MND nurses.
Gordon, whose family lives in the town, said he has been moved by the messages of support from politicians on both sides of the independence referendum campaign as well as people who have read his story.
Doctors have told him he could be in a wheelchair by Christmas so he now plans to make the most of the next few months by travelling to Iceland, Orkney, Switzerland, California, New York and Boston as well as Kirkcaldy to visit family.
And he wants to raise funds.
He said: “Despite its incidence increasing, MND still remains relatively rare. I know when I was first diagnosed I knew very little about it other than the fact it sounded pretty grim.
‘‘I hope that by telling my story other people may spot the symptoms quicker, get themselves checked out and hopefully diagnosed earlier.”
Iain McWhirter, head of fundraising and volunteering at MND Scotland, said: “The awareness that has been raised about MND in only a couple of weeks is exceptional, and we are truly grateful to Gordon for telling his story.
“We’ve been overwhelmed by the generosity of everyone who has contributed. We share an aspiration for a world without Motor Neurone Disease and this will help us to continue funding research so that one day a cure will be found.”
I won’t let MND become my life ...
I sit opposite my consultant neurologist. He speaks softly, but this time the atmosphere is different.
I know it isn’t good news, but nothing could prepare me for what he is about to say.
Tears form in his eyes as he explains that all the diagnostic tests point to something called Motor Neurone Disease or MND. I’m confused.
“That doesn’t sound good,” I respond awkwardly, thinking to myself: “I don’t have time for this.”
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. He bites his lip, before replying candidly: “We just don’t know unfortunately.”
Researchers have yet to discover how or why people develop the disease. In my case – and in around 95 per cent of diagnoses – there is no family history of the condition. When I press further, he concedes: “There is no cure.”
I cut to the chase: “What is the prognosis? How long will I live?”
Hesitant, he prefixes his answer with “everybody is different” and “it is difficult to predict”. He then wells up before admitting that we are talking “just a few years”.
My head is a mess. I stand up, walk across to the window, run my hands through my hair and stare out into the middle distance.
My mind goes blank. I don’t know what do. I’m 29 years old and I have just been given a death sentence.
How do I even begin to process what has just happened? In short, you can’t. With time it sinks in. And only once you have accepted it can you then move on and get your life on track, albeit a very different path to the one I had planned.
A few weeks ago I got the final confirmation I was dreading, but expecting. I am dying. And fast.
Now I have a new outlook on life. I’ve reassessed my priorities. While I am powerless to the disease that is taking over my body, I am now more in control of how I spend my days than ever before. I don’t do anything that I do not value or enjoy. That is exciting, liberating, empowering.
I have been told I am likely to be in a wheelchair by Christmas. A little different from my back-flipping, teenage days as a member of the Scottish gymnastics team. I struggle with everyday things you take for granted: writing, typing, holding cutlery.
I’m brutally honest about what’s happened to me not because I want pity or to be treated differently. I just want to do my bit while I still can.
Yes, MND has changed my life, but I refuse to let it become my life. Even in adversity, you can find positivity. After all, MND is neither cruel nor unfair, but a question to which there is as yet no answer.
A disease for which there is as yet no cure. We can and we must find it.