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No-one expects to receive a phone call from their Mother telling them they have been diagnosed with a fatal condition which has no cure and no treatment so early on in life, with an expected life expectancy of 2 years, but that is what we all had to face on November 15th 2018.
Motor Neurone Disease is the disease that healthcare professionals all put number on on their list of diseases they would not want to get. There is (currently) no cure, no ray of hope and the disease rapidly takes away your physical abilities, leaving you "trapped" in your body.
There is no scales of justice or laws of fairness in life, but this has inflicted a woman who had just begun (what she had expected to be) a long retirement stretched out in front of her, she had just become a Grandmother and had planned plenty of time on the horizon to spend with her three sons and Grandson. She has so much love to give and so much knowledge to share with my son Leo as he grows up that it is hard not to feel there is an overwhelming unfairness in it all, or be angry that this has happened to someone so young. She has always been fit and healthy and was running half marathons up until the diagnosis.
It has completely rocked us all and is quite hard to come to terms with. It still all seems very surreal. The idea of time has now turned completely on its head. Time is now precious, so precious, we have to take this disease day by day and not look into the future. We don't know whether we are looking at months or years but all we can do is enjoy every moment we have with my Mum.
I have done a lot of fundraising before as you'll know but this by far the most personal, I plan to keep this page open and take part in/set myself numerous challenges to fundraise for this cause over the coming years, to funnel as much money as I can towards the MND Association to try to help them find a cure for this brutal condition so that hopefully one day, Motor Neurone Disease is a thing of the past.
Please help me and cheer me along, my first event will be the Highland Fling, a 53 mile UltraMarathon in the Highlands of Scotland.
I have never ran that far or over the amount of elevation I will be facing and I will be taking on this event and the training whilst dealing what is happening to my Mum and what the future holds. She'll be in my mind through the training and i'll be crossing that finish line for her.
The Grim Facts
*MND is the name given to a group of related diseases affecting the Motor Neurones (nerve cells) in the brain and spinal cord.
*It is a rapidly progressive fatal disease, that can affect any adult at any time.
*Life expectancy for most people with MND is two to five years. Around half will die within 14 months.
*MND affects about 5,000 people in the UK at any one time. Men are affected twice as often as women.
*The cause is unknown and there is no cure.
*It leaves people unable to walk, talk or feed themselves, but the intellect and senses usually remain unaffected.
*MND kills 5 people every day in the UK.
All the fundraising from this page will go directly to MND Research to find a cure.