This week has been National Epilepsy Week so many of the epilepsy charities have been holding events to raise funds and awareness. I attended the Joint Epilepsy Council lobby of MPs at Westminster on Wednesday. Many of us had contacted our MPs asking them to join us so we could tell them our personal experiences of epilepsy and highlight the low funding for research and care which the Government provides. My MP was "busy in his constituency", which I think means he was off sorting out his expense claims, but several other MPs did turn up and at least listen. They also witnessed a severe seizure which was not planned but must have had quite an impact...
I also attended a lecture by Prof Helen Cross, the paediatric neurologist from Great Ormond Street who say Ross when we came back from France. I mentioned that Fin has had chickenpox (the worst case I've ever seen with spots in his mouth, eyelids and everywhere - 53 behind one knee was as far as we got on counting them...) and she was very concerned to know if Ross had been immunised against them or not. He hadn't as the GP just wanted to see him when the first spots appear - turns out it can be very serious for people whose immune system is suppressed (like Ross's is as a result of the steroids). After several ours in A&E and a blood test, we took Ross last night to get his jab, so hopefully he shouldn't get the pox at all... Lesson we've learnt is that Ross's case is so rare it's beyond the experience of most GPs and we should go to the paeditrician for all problems in future.
We're having a final push in the last few weeks before our Mont Blanc ascent to try to hit our target of £15, 780 for NSE - thanks to the generosity of everyone so far, we only need a further £660. Rich and I fly to Geneva on 11th June to try on that Friday/Saturday. Hoping for good weather!
Planning a long run this evening, but hopefully not as long as last weekend's when I managed to get lost in the woods and Clair was for sending out a search party...
Friday, 22 May 2009
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