Our journey with epilepsy officially began in January 2013 with Leo's first EEG in the RVI Newcastle showing he had epilepsy - we had suspected something wasn't quite right before Christmas.
After his diagnosis I was feeling very positive as other people I knew of who had epileptic children had been stabilised with their first medication. For Leo this has not been the case. It has been a very emotional and difficulty journey so far. Our specialist consultant told us we would need 'stamina' and she wasn't joking!
Everyday Leo proves what a fighter he is, getting on with life even in his toughest times. He is one of our rays of sunshine (Jack is our other, a very special big brother) and his smile and personality lights up the room.
We are still on our journey for stabilisation at the moment as so far all medications have failed. So, thank god for charities like the ones I am supporting! They seek alternatives to medication. The Daisy Garland (http://www.thedaisygarland.org.uk/ ) is a charity who provides specialist dieticians within the NHS. These professionals can deliver a specialist diet that can truly transform an epileptic child’s life where medication has been unsuccessful. Reading Daisy’s story and the change it made to her and her family is amazing.
Leo has been on the Ketogenic diet since February 2014 and there have been lots of positives, although there is a long way to go.
I along with a number of others will be abseiling off the Civic Centre in Carlisle to try and raise money to help other children and families who are struggling with the epilepsy. This is a challenge for me as I am not a fan of heights if I am honest! The money raised will hopefully go towards funding more dietitians and equipment to keep epileptic children safe. I also hope it raises awareness of epilepsy and the difficulties faced by those affected.
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