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A Chance at Life!

The statistics we work with are 80 000 children in the UK have epilepsy, of which 30,000 have difficult to control epilepsy and 15,000 are severe. The numbers for Scotland are approximately 10% of these in each case. Professor Brian Neville, HRH The Prince of Wales' 1st Chair of Paediatric Epilepsy, addressed an audience  in the House of Lords one day and asked us all to focus on the severe end of this spectrum because by helping the severely children we will be helping all children with epilepsy, everywhere. That is why our focus at MMT is on children with severe epilepsy.

And there is no question it is the right focus to have, because epilepsy in children is not perceived as a problem but a condition easily managed by drugs - not so for 30, 000 of these children and even more difficult for 15,000 of those children who are severely affected.

That said, I continue to be frustrated by the fact that other than those people living a similar life to my own, living with, or caring for a severely epileptic child, no one seems to understand what it is actually like.  The dynamics of that life are beyond normal comprehension. Even those families with a mildly epileptic child or even a child with learning difficulties can have no idea what it is like to live with a child whose life is out of control by epilepsy. Sometimes even I feel very lonely on this journey!

The carers role is 24/7. If the child doesn't sleep neither do you. If the child sleeps the chances are you will still watch over them, fearing seizures. A severely damaged child by epilepsy often struggles with language and communication. Seizures can happen any time, any where. They may not be able to tell you when they are sick or hungry or tired. A normal routine can be difficult. Even playing in the garden often requires supervision. In their own time, never yours is normal. But behind those eyes is a child that understands, often trapped without communication skills, challenged by the need and the desire to express themselves.  This can result in challenging behaviour that can be violent.

And add to that the fact that every single child with severe epilepsy is different. It takes time to get to know and understand the needs of that child.  Consistency of care is essential. A stranger will be a stranger for a while and will struggle to meet that child's needs. The risks, if you get it wrong, are huge.

These are children who cannot benefit from traditional respite. They cannot integrate into just any community. They don't attend main stream school. They are the burden of the state because they are expensive.  Their needs are significant. The right school is often denied them because of the cost or a lack of understanding of the problems. They are the burden of the family they live with because they are the ones who know them best and no one else can really meet their needs.

I say they are a burden but we love them dearly, unconditionally. They are only our burden in the context of the struggle we have to care for them. So why is it that, in my role as founder of MMT, sometimes I feel as though I am failing to communicate to the world the extent of our need for our children? I am the voice of these children and their families because I live that life too and I have chosen to represent them through my charity.

At MMT we have raised millions of pounds in support of these families but it is merely a dent in the scale of the problem. Those who have taken the time to know and understand the cause have supported us most generously and I am eternally grateful and humbled by their kindness (they know who they are.)  For others though our cause remains beyond their comprehension.  They cannot hear us.  They are not listening. Or maybe we are not shouting loud enough.

MMT is not just about palliative care in order to make life a bit better for our children and families. It is much more about diagnosis, treatment and eventually cure. It is about unburdening children, families and the state of the terrible problems that severe epilepsy in a child brings for us all. A day out, a day of respite for the family, a treat - it would be nice if the carers know and understand the child's needs and seizures stay away that day and the child is minded to conform to routine in order to get out of the house on time.  But better that the epilepsy were to be controlled because of a successful diagnosis and treatment or even a cure that will ensure the problems I am describing never evolve or at the very least, are minimised.

It might seem to be the stuff that dreams are made of but with the right financial support we can make this happen. Alice in Wonderland didn't happen in Glasgow because MMT doesn't actually have a network there. We were relying on someone else's network. Sadly, Glasgow wasn't listening. It will happen elsewhere however and we will continue to fundraise because children with difficult epilepsy deserve a chance at life too.

Ann Maxwell
Founder of MMT and Mother of Muir 

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