Thanks to all who donated to Demi's appeal she's asked me to tell you how excited she is to have raised almost £1500 (Inc gift aid) and to receive a thank you letter from her charity telling her that the money she raised will help support the project they are supporting at the Evelina Children's hospital project - making DBS as effective as possible for children! Everyone has been very generous and we are extremely grateful for your donations and good wishes for Demi's forthcoming DBS operation. Only 20 days until surgery and we are all both excited but nervous.

Thanks for taking the time to visit my JustGiving page.  Up until October  2012  I was a happy, healthy 9 year old who loved swimming - I even won some competitions at my swimming club gala.  I also started street dance and performed in a dancing display at our local charity gala a couple of weeks before the school holiday.  My best memory that year was when I was a bridesmaid at my uncle's wedding in August at Norwich Cathedral it was a brilliant day and I loved my hair, dress and shoes!  At half term, I had a sore throat which developed into a life threatening brain infection, causing damage to my basal ganglia, the part of the brain that affects mood, communication and movement.  I started to get better slowly.  I had to learn to swallow and talk and teach my arms to work again properly.  My left arm isn't able to do much yet but it is slowly improving.  I managed to walk a little but then I started with Dystonia which spread throughout my body and now I am unable to walk or stand and have to use a wheelchair.  I have to take alot of medication every day to try to help my symptoms.  

Dystonia causes uncontrollable and sometimes painful muscle spasms due to incorrect signals from the brain.  It affects at least 70,000 people in the UK, 8,000 of these are children and young people like me.  Dystonia also results in abnormal postures or movements, with and without tremor.  Life with dystonia is very hard.  It makes you very uncomfortable and the pain can be pretty bad.  It has turned my life upside down and affected my family because I need to have constant support to do even simple things that people take for granted like washing, dressing, eating or even just holding a book.  When I have spasms it makes it very difficult to concentrate at school and I can get very tired.

In August 2014, I am having an operation called Deep Brain Stimulation (DBS).  The doctors will place electrodes in my brain and wires connect them to batteries implanted in my stomach.  The batteries send electrical pulses to affected parts of the brain to 'reset' them.  DBS isn't a cure and doesn't work for everyone so we will have to wait and see if the operation is a success.  The doctors who treat me at the Evelina Hospital in London are doing research for a cure for dystonia and so I would like to raise money to help them do more.  I can't do a sponsored swim or run so I tried to think of what else I could do.  I have to shave my hair off for my operation so I thought it would be a good idea to get sponsors to help me feel better about losing my long hair as it took such a long time for me to grow.  I am hoping to raise as much money as I can before my operation and then when I recover I would like to do something else.  Until I was ill I had never heard of Dystonia.  Since being in hospital alot I have met other children with it - some were born with the condition and others got it from infections just like me.  They are all very brave and I would be very happy to think that my fundraising would help find a cure to stop them suffering.  

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