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Where are we now?

As you know the work of the Trust has always been driven by our personal experience of raising Muir. I know nothing else about epilepsy other that that experience.  Each child's journey is unique.  The challenge for each family is therefore a different one.  But I still believe that Muir is my messenger and what I need to do for him is what will help other children in the world with difficult epilepsy, and their families too.

Being the fundraiser for the Muir Maxwell Trust is not an easy role.  Apart from organising exciting events and pursuing wonderful prizes for auction, we tell our story in a film that we make every year about the work of the Trust. Two films are in progress at the moment.  One of them is for the Hilton in the Community Foundation Ball in October and the focus is on our beneficiaries and how our practical support has changed their lives, in particular the epilepsy alarm.  On the night the Hilton Foundation will be raising money for much needed epilepsy alarms.  The basic alarm costs £500.  We distribute up to 80 in a month.  That's a big spend!   

Our own video for this year, which will first be shown at the Afternoon Tea, will once again focus on Muir.  As you know Muir will be 13 years old soon.  We have film footage of Muir dating back to 2003, when he was just 5 years old.  I plan to use this historic footage and bring it up to date with Muir as he is today. Six years of archived material tells a very moving story - you can see clearly the damage that early onset epilepsy does over the longer term.  And he is profoundly damaged!

Much of what I have achieved for other families, in particular with Dravet Syndrome and other genetic disorders, has come too late for Muir.  If you like, he is the example of what might have been for many children without early intervention. The plan now is to identify how we can intervene even earlier!  That's the reason why we are partnering Edinburgh University College of Medicine to set up the Muir Maxwell Childhood Epilepsy Centre. The centre will focus on transformational cutting-edge research that will directly benefit children and families.

I believe the next chapter in our story will represent a giant leap forward in the treatment of childhood epilepsy.

It is extremely exciting!

Ann Maxwell

(Muir's Mum)

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