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Support - or not? That is the Question.

Apologies once again for the absence of a blog for a while. We are busy. There is nothing more to say than that. Except that we are so excited about our forthcoming Cinderella Ball in December and our Secret Garden FS2012 Gala Dinner in  February. It's all go at MMT. And we have our  sights set on a further two major events next year. Watch this space!

But in the meantime what's on my mind? - well, quite a lot actually. Firstly, the tragic death of Luke Currie, just 6 years old. He passed away in his sleep. The cause was SUDEP. How does one come to terms with the death of a child especially one so young? I do not know the answer to this question. Except to say our thoughts are with Marie and John and their family.

Another thought on my mind is how difficult it can be to get children and families living with epilepsy the support they need. Demand for alarms is now way beyond what we can comfortably meet. One of our trustees took it upon himself to write to the Scottish Government with all the evidence we have gathered over the years, regarding need.  With the best will in the world, the Scottish Government has expressed a desire to fund alarms for Scottish families - they have even said that they will but NHS Scotland simply does not have the funds to do this. It is with great disappointment that we have to acknowledge that the responsibility for providing alarms remains with MMT and will no doubt remain with MMT for the forseeable future.

An epilepsy alarm is clearly life changing for many families. It continues to disappoint me that there are so many doubting thomas's, even sceptics, regarding alarms. Some comments that have reached our ears made by members of the medical profession leave our jaws gaping and medical professionals who refuse to sign our vouchers confirming a child has epilepsy leave me cold. I feel colder still when GP's insist that parents must pay for such a signature and as a "none urgent" request they are left to the mercy of the appointment system.

Who do these people think they are? An epilepsy alarm costs MMT £600 (£740 retail). That's a lot of money and our small team work tirelessly to raise the funds for this life changing piece of equipment. They clearly have absolutely no idea whatsoever as to what it is like to live with a child who has difficult epilepsy. Quality of life is what we lose and sleep deprivation is the norm. Anything we can do to unburden families in even the smallest way of this tragic consequence of a child's uncontrolled epilepsy has to be worth doing and as a matter of priority. Please quote me on this whenever and where ever you feel it necessary. Their behaviour is simply unacceptable and frankly, unforgivable.

Then there is the question of close family support. Difficult epilepsy in a child can be frightening for some family members and traditional family support may not be forthcoming. That was definitely the case in our family and it remains so. So often I see an entire community supporting one family whose child has difficult epilepsy, aunts, uncles, cousins, grandparents, brothers, sisters and even neighbours who simply can't do enough to help a family in need. And when these communities decide to fundraise, as they often do, I am humbled by their commitment and their amazing achievement. Other families are abandoned and left to find their own resources, suffering terribly with the burden of responsibility and siblings too are compromised. It is a tough call and my heart goes out to all those who are dealing with their life in these circumstances without much family support, sometimes none at all.

Unless you are living with a child with difficult epilepsy  it is difficult to understand how  limiting the impact of the illness can be on daily life. So often I find myself trying to make the needs of our beneficiaries fit the remit of children's charitable Trust's for a funding application but unless it is for a lovely day out or a new children's play centre or some form of annual respite, the application simply doesn't fit. I can't seem to communicate to many of them that these are the kind of benefits we will enjoy at the "finish line" if we ever get there  - but our children and their families are struggling to get to the "start line"; a night of unbroken sleep, a seizure free week, a chance to get out the door in good time in the morning without a major catastrophe, manageable behaviours in a public place. The list goes on. The needs of our beneficiaries are much more fundamental. If I tell you that we cannot get funding for our projects from Cash for Kids or Children in Need, just two examples of many, I am sure you will appreciate my frustration.

That is why we have established the Muir Maxwell Epilepsy Centre in partnership with Edinburgh University under the helm of Richard Chin. Richard will run a centre "without walls". In his capacity as head of the Centre, based in Scotland  and as Senior Lecturer in Neurology at Edinburgh University and as a Consultant at the Royal Hospital for Sick Children in Edinburgh, he will have access to patients and information that will enable data to be gathered in a way that has not been achieved any where else in the world. Richard is planning a data registry that that will for the first time allow us to ask the questions why is this happening, where is it happening, can we stop it happening and if we can't stop it happening what is the life style consequence of this happening and how do we address that?

Our pledge is £1m towards the centre and we are fundraising in earnest as a consequence.

It will be the next stage in MMT's contribution to progress and it represents a giant leap forward, potentially revolutionising research and clinical practice for children with epilepsy, something that will happen in our life time!

Watch this space!

Ann Maxwell
Mother of Muir - almost 15 years old (14th January 2012!)

Next Blog
Transition from Child Health to Adult- the Next Stage in Muir's Journey

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