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In February 2006 I was diagnosed with incurable bone cancer in my head. The amazing part of this story is that were it not for our 15 year old son Muir who is profoundly damaged by a severe form of epilepsy called Dravet Syndrome, and also the Muir Maxwell Trust, a charity that my husband Jonny and I set up in Muir's name in 2003, to help children like Muir struggling to cope with difficult epilepsy and their families, I would probably not be here today.

Such a rare kind of brain tumour meant that we had to find  a unique specialist. Through the charity we were able to network with neurology and cancer specialists around the world and eventually found Professor Michael Gleeson at Guys Hospital in London. Mike operated on my head twice that year and although I will never be cured, only 20% of the tumour remains and it has not changed since.

Mike is now my best friend in the world!  Because of him and his miracle work I have been able to continue fundraising and campaigning for this desperately needy cause and importantly, I have been able to continue running. It is not as easy as it once was - I do have some cranial nerve damage but running keeps me as fit as I can be and the occasional challenge of a race along the way - albeit in this case, a very hilly one - is good for me.

You may be surprised to know that I hate asking for money but we need it and I think it would be wrong of me to run this race and not ask for a little bit of sponsorship. A recent audit of paediatric epilepsy services in the UK revealed that much has improved in recent years (and I know that  together with our supporters, MMT has contributed significantly to that - thank you.) But much remains to be done as the audit did reveal some worrying facts - over 50% of children in the UK still do not see an epilepsy specialist nurse or a neurologist specialising in epilepsy within the first year of being diagnosed.

Interestingly, the audit only touched upon the quality of life issues that are a significant problem for children and their families struggling to cope with complex epilepsies and I believe much more about the problems in this area have still to be revealed. That's why we have partnered Edinburgh University and Richard Chin, a specialist epidemiologist whose research is focused on the quality of life issues for families as well as causes, treatments and cures. We will leave no stone unturned but we need to keep the funding coming if we are to realise this extremely worthy and achievable goal and continue to support other areas of paediatric epilepsy, including the distribution of vital epilepsy alarms to children and families.

In supporting me you will be supporting them! For that I cannot thank you enough.

Heartfelt thanks always,

Ann (on behalf of MMT)