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  • What is it the Muir Maxwell Trust does?

    9 Nov 2015

    Yesterday I attended the Dravet Syndrome UK (DSUK) conference. It was a most interesting and informative day, delivered by medical professionals, about the severe epilepsy syndrome our 18 year old son suffers from and it focused my mind on our own charity

  • 'Extraordinary pressures on a limited budget'

    17 Aug 2015

    Parents of profoundly special needs children beware the social work 'get-out' clause for the provision of your child's care needs. The title above is a direct quote from an email written by a social worker and shared with me by the mother who received it.

  • Summer time and the living is........

    14 Jul 2015

    Yes it's summer time and school is out and families everywhere are relieved to be free of their relentless early morning routines.

  • A world peace moment

    8 Jun 2015

    I spent a week in France on holiday, taking a break from my charity work. Eight ladies met in Provence, hosted by my lovely sister in law who runs a company called Picnics in Provence.

  • Being mindful about mindfulness

    29 May 2015

    I am a runner. At least, I waken up every day with the ambition to run. Sometimes I don't get there - so may be I am not a runner? Actually I like to run and when I do I am reasonably comfortable with it. Although if I am honest I was a better runner b

  • Confronting your own disability

    22 May 2015

    My son is disabled - more specifically he is profoundly learning disabled. As his mother I was forced to face the question of my own disability recently when I had to complete a Government questionnaire designed to profile parents of disabled children.

  • How does a learning disabled child move on?

    21 May 2015

    In the absence of suitable residential care for Muir in Scotland, we took him by plane to visit Young Epilepsy at Lingfield in Surrey. Muir has been classed as a potential school leaver for a while now but with nowhere to go.

  • A Recipe for Successful Corporate Philanthropy

    5 May 2015

    Our charity, the Muir Maxwell Trust (MMT), is a small Scottish charity raising funds for children in the UK with complex epilepsy and also their families. In 12 years we have raised over £8m for our cause so we 'punch way above our weight'.

  • In my lifetime

    24 Apr 2015

    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.

  • The price is five hundred pounds.

    20 Apr 2015

    In epilepsy there is a risk of death, particularly whilst sleeping. It is referred to as SUDEP - sudden unexplained death in epilepsy. As parents, it's what we all fear and not enough is known about SUDEP to allay those fears. The researchers are working

  • Time to get angry about epilepsy

    13 Apr 2015

    Beat it, treat it defeat it - whichever way you look at it we need to deal with it.

  • "The same as you?" Really! Even those with profound & multiple learning disabilities?

    2 Mar 2015

    In the year 2000 the Scottish Government reviewed policy and services for learning disabled people and set out a 10 year plan in a document called "The same as you?"

  • In the Bleak Mid Winter......

    5 Feb 2015

    Life with a special needs child is tough. As I write Muir sleeps, all 18 years of him. He has the cold, a touch of flu perhaps. We have all had it and it has worn us down. But Muir's humour is surprisingly in tact. He is smiling a sleepy smile, through a s

  • Medical Marijuana for the treatment of Epilepsy

    27 May 2014

    I first heard of this about 18 months ago and harbouring the usual prejudices I dismissed it as nonsense. But the discussions on social media, particularly in the USA, kept catching my eye.

  • Out of My Comfort Zone

    26 Nov 2013

    I don't do jargon. I never have. In my role as founder and fundraiser of MMT I have rarely attended any conferences but increasingly, albeit reluctantly, I find myself as a voice for profoundly learning disabled children and young adults and their familie

  • I Have a Dream

    11 Nov 2013

    Imagine a place that comprises a small collection of exquisitely designed houses, where no matter what the weather they bask in their own glory, sitting like little castles in a landscape that is sympathetic, each with a front door that invites the dwelle

  • Shopping For Shoes!

    23 Sep 2013

    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.

  • So We Took Muir to Barbados

    23 Aug 2013

    It's a tough life for children when they have a sibling struggling to cope with profound epilepsy. There are so many family activities in life we all take for granted that often become impossible.