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"All We Really Have is Our Story."

I watched the film Australia with my children this week. I am sure I am not quoting this line accurately but Hugh Jackman says to Nicole Kidman early in the movie words to this effect and I heard them and they rang true. We aspire to all sorts of things in the course of our lives, many of them material and the reality is that once we are gone all we leave is our story. And in that moment I realised I already have the beginning of my story as a consequence of raising Muir. And its a good story and I hope it will get better!

Last night Jonny (my husband) and I attend a celebration dinner as guests of the Principal of Edinburgh University, Sir Timothy O'Shea  and Lady O'Shea to celebrate honorary degrees awarded to a small number of extremely worthy people. It was a huge privilege to attend this dinner as a consequence of our partnership with the Edinburgh University College of Medicine, to establish the Muir Maxwell Childhood Epilepsy Centre.  Sir Timothy introduced every one of his 40 or so guests, more Lords, Ladies and Sirs than I have ever encountered knowingly in a room before!  And others too, equally as worthy, including Phil Cunningham and Aly McBain, famous on behalf of Scotland for the accordion and the fiddle, respectively who had been awarded doctorates.   

On their behalf, Sir Timothy told each guest's story and they were all worthy stories, believe you me! Last night's experience underwrites for me the legacy that we must all endeavour to leave; our story. And lets face it, none of us know when we are going - as I type I am watching Michael Jackson's memorial concert!

We are full throttle ahead now at MMT to fundraise for our new Muir Maxwell Childhood Epilepsy Centre.  Sir John Savill, the Vice Principal of Edinburgh University College of Medicine is the visionary here. In time, not so far away, I am confident that this centre will change the outcome for children and their families with difficult epilepsy.

So help us if you can, fundraise for us in whatever way you can.  I genuinely believe we have identified the fastest and most cost effective route to a solution and a cure for some of those difficult epilepsies in our children. This will be a world class centre with outcomes that will change the lives of children with epilepsy all over the world.

Thinking of you all as you endeavour to manage your children with epilepsy this summer -I know first hand that this kind of life is a challenge for patients, parents and siblings alike!

Best wishes,

Ann Maxwell
Muir's Mum

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2 Comments

  • Tiffany Chen replied on 18 Jul 2009 at 05:24

    My nephew who will be 2 is september 09, has been diagnosed with Dravet syndrome, he has been suffering with seizures since 6 months old. He is now on 3 medications , one of which is Seripentol, I think, but it has caused him I think to slow down, he used to walk well but ever since this 3rd medication I have noticed , he falls alot and no control on his limbs, his development is slightly slow as told bu a health visotr. I would just like some advice as to whether he will recover & develop normally & if this medication is stopped , will he get more seizures as it is he gets one every 6 weeks atleast, but the last seizure he had , he did not recover well from it, his Dr have reduced teh amount of medication as he was not eating at all as well, please can yo advice if there is anything else we can do & also advice on the Kietogenic diet. I look foward to hearing from you.

  • Ann replied on 22 Jul 2009 at 13:27

    Tiffany,

    I am not a doctor and we are not a help line as such but from what I read in your comment it does sound as though your sons medication levels are verging on toxic. This can be dangerous. I cannot advise you as to what the right levels should be. You will need to refer to your consultant.

    However, when stiripentol is introduced, the other drugs should be slowly reduced to a very low amount. I am presuming he is on clobazam and epilim but he may not be.The amount of stiripentol is relevant too. Your son is very young so he will not need much at all. The medication is only right when he is alert, active and drinking and eating normally. You will know when you have achieved this and as long as he is listless, falling down and without appetite he is not in a good place and the drug combinations are not right. That much I do know.

    Remember you are always entitled to a second opinion. If you continue to be unhappy with the medication levels prescribed by your consultant you can ask for a referral to someone else. Stiripentol is still new to consultants and we are aware that many of them are not sure how to prescribe them They also dislike interference from outsiders, people like me! But my conscience won't allow me to stay quiet. Muir's drugs were wrong. We were losing him (literally) and I had to alter them dramatically under the guidance of someone other than my consultant - a pharmacologist who understands the efffects of drugs, especially in combination. What we achieved has been amazing and it is possible. You must get the drug combination right.

    I hope this helps.

    Best wishes

    Ann Maxwell

    Muir Maxwell Trust Ltd.

 

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