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Where the Salmon Leap!

My abiding memory of Pitlochry as a child is watching the salmon leap up river. Perhaps it is a poignant reminder of the up-stream struggle we have with our children with severe and complex epilepsy. We win against the odds. Our struggle is not restricted to a particular time of year however, it goes on day in and day out for a life-time. As parents we deal with it instinctively and our children with profound epilepsies do so too, like brave warriors. There is much to celebrate along the way and we do celebrate, particularly amongst our own community with those who understand the limitations of the achievement.  That majestic leap out of the water and up into the air that then propels the salmon forward and up stream, is symbolic of the sheer strength and determination, the will to carry on, that I see in many of our families everyday, as they struggling to cope. My personal leap is this - the Muir Maxwell Trust - a vehicle that enables me to make a difference, not just for Muir but for all children with intractable epilepsies. 

Pitlochry High SchoolOur final school visit this week took us to Pitlochry High School where we were immediately greeted by Deputy Head Janice McDonald and whisked off to the gym where we would be presenting to P7 a S1. Pitlochry High had a week focused on 'healthy living' and the MMT story served as the climax of that week with some information about epilepsy and a brief insight in to the lives of children a little less fortunate, in terms of health. This group of approximately 70 children were most attentive and they enjoyed my presentation. The questions that followed were challenging however and evidenced very curious minds. In particular they were curious about Muir. 

'Will Muir be able to speak properly one day?'

So difficult to explain to a young person that it is unlikely because the damage that has been done is irreversible. Muir does learn new words everyday though, so his language is improving but very slowly. 

'What exactly do the three medicines do that Muir has to take?'

Now that really is a complicated question. They are meant to control the electrical activity in Muir's brain and inhibit seizures. They do that to varying degrees on different days. (Note to self, prepare a suitable answer for this question in future!) 

'Is Muir sociable or does he live in a world of his own?'

Sometimes, like all children Muir likes time out on his own but he is essentially very sociable and enjoys the company of other young people his own age and especially the company of his brothers. 

'Does Muir understand that he has epilepsy?'

I think not but he does realise his own limitations and manages his condition well, in the way that another child might recognise they are tired and need to sleep. No, he has no concept of epilepsy or the fact that he is different. 

Janice Macdonald made a point of highlighting that the Muir Maxwell story in fact is not a sad one. There is much to celebrate about Muir and also the work of the Trust. That point was illustrated this week by the fact that Muir almost managed to walk a mile across the Forth Road Bridge in aid of Sports Relief, but for the fact that he began with a sprint and resorted to the wheel chair towards the end. Well done Muir. Mummy is very proud of you!

"Overall I thought Ann's presentation was a good experience and I appreciate that she came to tell us all about her and Muir’s life."
P7 Pupil 

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