Today is MND Global Awareness Day. I remember 2013’s MND Awareness Day, just after Dad had died. Nobody knew very much about MND; the ice bucket challenge was yet to come, as was The Theory of Everything. We’ve come so far with raising awareness, but today will help us to raise the profile of MND even more.

This year’s Motor Neurone Disease (MND) Awareness campaign is called ‘Shortened Stories’. It highlights how many people’s life stories are cut short by MND; 50% of people die within 2 years of being diagnosed.

On the 1st June my fellow committee member from the MND South London group suggested that the group could use MND Awareness month to share the ‘Shortened Stories’ of our families and friends who had inspired us to volunteer for the Motor Neurone Disease.

I thought this was a fantastic idea, but it also filled me with dread, as it would mean I would have to write about my Dad’s story, which was cut short in April 2013. He was 49.

Let me set the scene for you: my Dad really was the life and soul of any party. He was known for it, among family, among his friends, among my friends. When I was 17 I secretly invited about 25 friends over for a party and, rather than kick them all out, he shrugged his shoulders, put some music on and got cooking a chilli for everyone; this is the man he was.

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He was a huge sportsman – watching and playing. We’d spend every other Saturday watching Huddersfield Town play; he coached the Scratch Team at the golf club to victory; he played football, golf and cricket, and taught me, my brothers and my sister to do the same – we’d often have a kick about or a game of cricket on the back lane.

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When I found out he was going to die, I was surprised not to hear the noise of my heart breaking.

He lost his voice within months; I used to have dreams where he would talk to me. I’d wake up in tears when I realised it was just a dream. He was dead within 4 years, and I know we were lucky to have him for that long.

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I could write about what his life would have been like for pages and pages, for he was always doing something with us, or with his friends: instead I’ll keep it very brief, and selfishly, only on the shortened story of Man and Eldest Daughter:

Since Dad died, I have graduated. I’ve transitioned in to the life of ‘proper work’. There was the first Christmas without him going downstairs first, and saying ‘he’s been!’ There have been two more Christmas’ since then. There have been family holidays without the chief planner. I moved to London.  I met the love of my life, and he asked me to marry him.

There will be a Huddersfield Town season ticket, without him sat next to me. There will be a ‘first home’ where he isn’t there to help do the DIY. There will be a wedding without a Father of the Bride speech. There will be his first grandchildren, who will never know him. There will be countless occasions where he will be missed so sorely that it often feels like my heart is breaking all over again.

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Taking back control through fundraising

When Dad was diagnosed with MND, I was 20 years old. I was about to leave home for University and, knowing that I wasn’t going to be around to help my family out, I felt utterly out of control, and scared.

When you lose control, you try anything to seize back a little bit of control. For me, that came in the form of thinking up fundraising challenges. It felt like fundraising was the only way that I could make a difference to the shitty deck of cards that we had been dealt with, and it wasn’t long before I grabbed a group of my friends and tackled the Three Peaks Challenge.

 It was so hard, but we met my Dad and my family at the top of Snowdon (when we were so close to finishing!) and that will always be one of my absolute favourite memories.

When Dad died, I was 24 years old, and as I turned 25 a friend bought me a place in the Sheffield half marathon. Every training run made me think of my Dad, and forced me to keep running even when it was tough. Almost exactly 12 months after his death I ran the Sheffield half marathon, with my Dad’s brother, and it was just as emotional as I expected it to be.

Having not run since that half marathon, I must have been experiencing a lack of memory as I entered Nick and I in to not only the Great North Run, but the Royal Parks half marathon too!

Last weekend Nick and I completed the Great North Run, and despite having done fundraising challenges before, this one felt different. I think it might have been because I have more involvement with the MNDA now – I felt a real pressure to fundraise successfully and do the run in as good a time as possible.

Newcastle’s half marathon was hard work – Nick and I fell out and made up several times during the 13.1 miles! – and even the thought of my Dad didn’t motivate me at times. I think there’s an unwritten rule that suggests love and heartbreak can give you the inner strength to do anything, but I certainly didn’t feel that way around the 10 mile mark on Sunday!

We spotted lots of people running for MND, but it wasn’t until the last mile that I spotted any cheerers – I then saw 2 men with a banner around the 12 mile mark – if by any chance you happen to be reading this, you have no idea how much seeing you guys spurred me on!

Just as we approached the finish line we spotted a lady running for MND, and the 3 of us crossed the finish line hand in hand. We made it to the MND tent in the charity village, and we felt like superheroes – thank you so much for all of your support.

 Each event I attend to do with the MND Association makes me feel prouder and prouder to be a volunteer, both as a fundraiser and with the South London group. In less than 4 weeks Nick will do our second half marathon – The Royal Parks – and no doubt the MND family will see me through those 13.1 miles too.