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Shopping For Shoes!

Shopping for shoes with a girlfriend or standing in a Tesco store with a bucket collecting for MMT, I can do neither for much more than two hours but there is no doubt the latter is good for the soul.

Over supper my husband Jonny and I compare notes on our collection experience with great stories to tell about the special moments - the young girl who asks her grandmother 'What is epilepsy?' and following an explanation wants to give, three teenage school kids who stop at the exit, turn back and each drop coins in my bucket, the elderly lady who declares she has five healthy grandchildren for which she is grateful and she stuffs a note in the mouth of my bucket, the man who has no change and so it's our lucky day we get a big note!  In truth, collecting for MMT in Tesco is not just financially rewarding, there is a feel good factor that cannot be replicated with any other kind of fundraising. As I said, it is good for the soul. I could do it all day long, except for sore feet and eventually a sore back from standing still.

I have been fundraising for our cause for over 10 years now and it never gets any easier. Of course there are times when I think about giving up, retiring - living the life of a lady who lunches in between shopping, manicures and hair do's! Attending charity lunches rather than organising them! Even just being an ordinary Mum occasionally is tempting. But I am not an ordinary Mum. I have Muir and he needs me in a different way to most children.

And then there are the children like Muir whom I would be abandoning. In truth, I can never give it up. There is so much to be done on behalf of these children with epilepsy and when I look back on our contribution over the last 10 years and see the difference we have made, enabled in part by the fact that I am living life with Muir who is profoundly damaged by epilepsy and therefore I know where the needs lie - I realise I must keep my head down and carry on. It is extremely important work and if I stop now who would do it instead of me? There are other worthy souls I know of doing great things for epilepsy but no one is doing specifically what we are doing. Our work would simply come to an end. I can't let that happen.

These days I am running in and out of schools across Scotland raising awareness about epilepsy. It is an eight month campaign that next year will take me across the border in to England, weaving my way down to London for the Virgin London Marathon next April. My talks take place in assemblies, chapels and classrooms and although each one is similar, I adapt them to fit the age profile of my audience and also the time available to speak. One consistent message and words that echo in my head on every occasion is the fact that epilepsy is amongst the oldest conditions known to man, even mentioned in the Bible - myths and superstitions over the centuries mean that it is stigmatised and that has impeded scientific progress and understanding. Epilepsy at its worst is a desperate illness.

What has happened to the brain surgeons - who wants to be a brain surgeon when they grow up? I ask this question in schools and the answer is no one. Not a single hand is raised. They don't know about neurology or epileptology in medicine. We know that even epilepsy nursing specialists are few and far between. I feel an obligation to highlight what is becoming a plight within the medical profession. And yet we are on the cusp of great things for neurology conditions including epilepsy. It would be a great career path to follow.

In the meantime CHILDREN ARE DYING BECAUSE OF EPILEPSY. Yes, in my life I learn about the death of a child because of epilepsy almost every week, from babes in arms to toddlers to school children and teenagers. Yet in schools I must hesitate to mention this for fear of frightening young people. How do we raise awareness if we cannot talk about the reality of this severe and complex illness and how do we save lives if they know nothing about the risks? These children ask me sensible questions - what are the causes, can it be cured, are we be born with it, will it make us go mad? And in my answers I experience a sense of helplessness, although always hopeful.

Epilepsy is no-one's fault. It is not the result of a delinquent or dysfunctional society. It is not a modern illness. Children with epilepsy are not considered to be vulnerable children in need of a helping hand to a better start in life. They are dealing with a condition that has prevailed forever and little is known about it. They suffer emotionally, physically and sometimes developmentally as well. They have no control of this illness. They are at the mercy of the medical profession and they often need the support of educational and social services. Understanding and awareness of epilepsy across the wider population is key. Next is funding but the money must be spent in the right areas in the right way that will provide the most benefit to children with epilepsy and their families. To my enormous frustration, essential services and support are still missing, relevant research has been thin on the ground, awareness is still hugely lacking and some of the medical profession sadly fail to prioritise the children and their families over their own self-interest.

Our Mum on the Run campaign for Epilepsy (MORE) is shouting out loud for;

MORE funding for epilepsy
MORE awareness of our cause
MORE specialist doctors and nurses
MORE cures for epilepsy - one of the oldest conditions known to man

How can I possibly prioritise shopping for shoes with a girlfriend over this?

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