Kate and Leo’s story – following Kate’s journey to running the Great Cumbrian Run 2013: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! The support of our family and friends has been second to none, something we will never forget and always be grateful for.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 but for some the journey of medication has come to an end. 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.So when I am running that 13.1 miles and it hurts I will be thinking of how many more epileptic children the Ketogenic Diet and dieticians could help in the future, our consultants warning of 'stamina' but above all our beautiful little boy Leo and the cuddle I will get on the finish line!
Update from Kate on how Leo is now:Leo has now been on the diet for 9 weeks! After 2 weeks his tonic clonic seizures stopped (these are the ones we stereotypically see on the TV of people on the floor shaking). There are tens if not hundreds of different kinds of seizures, stemming from different areas of the brain that effect children in different ways. Leo was having 2 to 3 of these tonic clonics daily and they took him around an hour to recover from, on top of these Leo was having drop attacks too. Leo now only suffers from drop attacks. These are really hard to see as they are often the kind of seizures that ends in injury – black eyes, bit tongues, cuts and scrapes, usually to the face! However he is having better days but we still have a long way to go.
The biggest positive for us is that Leo has turned back on to the world. He is 2 and a half but cannot speak but for the past 6 weeks he is babbling again and trying to communicate, pointing and making a noise, clapping and dancing to music. It is like he has been asleep for the past 14 months while not on the diet and suffering seizures and the diet has woken him up! I can only hope that it continues this way and as we begin to take out his mediation (he uses 4 currently) the diet will begin to work its true magic. Many believe that drugs actually stop the diets true effects – we certainly hope this is the case.In the meantime we have to keep going, and when things get really tough Sara Garland, Daisy’s mum, is the inspiration and calm person we need to talk to. This is just one of the ways she supports the families going through this challenging time.
It is thanks to people like Ria, raising money and also awareness, that more of these brave children, and their families, will get the amazing support from The Daisy Garland charity that we are receiving.Thank you for your support xDonating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.