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In my lifetime

I have a brain tumour. What is it they say? - 'a brain tumour is what I have, not who I am.' I have bone cancer in the middle of my head. It was diagnosed in 2006 and that year required two major life saving brain surgeries. Thankfully I was in the hands of a quite brilliant surgeon and although I will never be cured, he frequently reassures me that I will not die from this.

We launched our charity, the Muir Maxwell Trust, just less than three years before my diagnosis. For almost a year I had to stop fundraising. It was hard for me to do but necessary. At the time I was training for my first marathon. I felt jinxed because the year before I had had to stand down because of a stress fracture. I remember being really quite cross about the intrusion on my life's ambitions because of the brain tumour and that loss of control that I so enjoy was, for me, quite distressing.

Why am I telling you all this? Because I am writing about a day in my life as a full-time volunteer fundraiser for the charity that I co-founded with my husband, to provide practical support to children with difficult epilepsy and also their families who struggle to cope. Our charity, the Muir Maxwell Trust, is named after our 18 year old son, Muir, who has a severe form of epilepsy called Dravet syndrome. He has profound and multiple learning disabilities. My challenges pale compared to those challenges Muir has to deal with daily, both day and night.

I do what I do for Muir and children like him. I do it on a completely voluntary basis, without remuneration. My opinions are my own but I apologise for none of them because they are a direct result of the life I am living. Some would say I am driven. I would say it's a calling and although we have achieved many things under the umbrella of the charity and we have raised literally millions of pounds for this desperately needy and most worthy cause, it is only now that I can see what really needs to be done and the path that lies ahead.

Every day is about maximum results - believe me, we all know just how easy it is to lose a day. I can't afford to. I am an early riser and as well as running our charity, I have a family of three young men to care for, including Muir and of course, a husband. Taking good care of my health is important too. I keep fit. I eat regular meals and I eat well. As often as I can I run. Sometimes I cycle too and occasionally I play golf but badly. Six weeks after my first brain surgery I shared the Edinburgh Marathon with my husband's best friend who stepped in at short notice and we ran 20km each. We raised £54,000 for MMT that day. The wider team made it £80,000. It was a great day.

I am 53 years old. Our eldest son is 21 and just about to finish university. Muir is 18 and attends a special school where he is resident 4 days a week during term time. Our youngest is about to sit his GCSE exams. As a family we have come a long way, despite the challenges that life has presented for us. But at a point when life is meant to begin to blossom for our boys as they turn in to fine young men, I realise that for Muir this could slip away if I let it. The reality of severe and complex epilepsy has never been so obvious to me, nor so frightening as now. Muir will never work or marry or have children of his own. He cannot read or write - he can barely colour in between the lines. He needs care 24/7, including personal care. He can't go to the bathroom alone, he requires his food to be cut up for him, he has profound speech and language difficulties. His sleep is disturbed most nights and he manages seizure activity all the time. But he kicks a ball and runs like Bambi, he navigates his iPad like a true professional in order to watch Peppa Pig and listen to the 'noisy music' from Jungle Book with his head phones. He is deeply affectionate and adores the company of his brothers but if he is not fully engaged and properly entertained Muir's behaviours can become very challenging.

In reading this you probably now have a better insight than most people in to the serious consequences and challenges of caring for someone who has severe and complex epilepsy, unless of course you are caring for someone like Muir too. When I say that the world does not understand epilepsy, I do not say it lightly. Despite it being one of the oldest conditions known to man, the world is unaware of it's seriousness and the unbelievable impact it has on family life. I have maintained a relentless battle to ensure that Muir has had the best possible health care, social care and education and that, to some extent, is reflected in the work of our charity over the last decade. We have always followed the experience of raising Muir and tried to address the areas of weakness in services and care for others, that we have encountered ourselves. But based on this same philosophy for the future focus of the charity's work, the task that now lies ahead is colossal.

My calling is to make sure that young adults like Muir continue to thrive, living a life of fulfilment and engagement so that they do not become the burden of their family and quality of life for all family members becomes diminished. This can only be achieved when the needs of children and young people like Muir are recognised and understood. At the present time, we are so far away from that, it will be a challenge to change this in my lifetime.

So you see, I cannot afford to waste a day. Our fundraising is relentless, our awareness campaign must be high profile. I organise events. I manage social media. I speak at conferences, in schools at rotary clubs and in businesses. I represent our charity on the Cross Party Group (CPG) on Epilepsy in Scottish Government, we are a member of the Joint Epilepsy Council (JEC) and I have a regard for Westminster and the EU too. I campaign to Governments on numerous matters of social care for those severely affected by epilepsy. We have a partnership with Edinburgh University College of Medicine, the Muir Maxwell Epilepsy Centre, lead by Richard Chin with a focus on finding cures, better treatments and identifying the serious quality of life issues in epilepsy. We have pioneered a dedicated genetic diagnostic service for early onset epilepsies, an award winning service based at Yorkhill Children's Hospital in Glasgow and the Video Telemetry diagnostic unit at Young Epilepsy in Lingfield in Surrey, is named after Muir. Every day we distribute potentially life saving epilepsy alarms to worried families to help manage their child's seizures whilst sleeping. In fact the Muir Maxwell Trust is the leading distributor of free epilepsy alarms by a charity in the UK.

It's a big job and yes, sometimes I feel a little ragged at the edges, sometimes it is harder than others for me to keep going. I fight back against my own health issues by staying as fit and healthy as possible but even that is tough sometimes. If I had the choice would I do this? Some would say I do have the choice. Actually, I don't. I have no choice. I am here for the long term, until the job is done, driven by a calling and an overwhelming passion for our cause.

In my lifetime I want to see a better outcome for children and young people with difficult epilepsy.


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