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Please help Demi - she needs medical equipment!
£255 raised
3% of £8k goal
10 contributors
3 Years running
Thanks for looking at our page.  Up until October  2012 Demi was a happy, healthy 9 year old who loved swimming - she won some competitions at her swimming club gala. She had just  started street dance and performed in a dancing display at the ...

Thanks for looking at our page.  Up until October  2012 Demi was a happy, healthy 9 year old who loved swimming - she won some competitions at her swimming club gala. She had just  started street dance and performed in a dancing display at the local charity gala a couple of weeks before the school holiday.  Her favourite event that year was when she was a bridesmaid at her uncle and aunt's wedding in August at Norwich Cathedral - it was a brilliant day and she loved every minute she was so proud of her hair, dress and shoes!  At half term, she had a sore throat which developed into a life threatening brain infection, causing damage to her basal ganglia, the part of the brain that affects mood, communication and movement. She started to get better slowly,  having to learn to swallow and talk and teach my arms to work again properly.  Her dominant left arm isn't able to do much yet but it is slowly improving.  She is trying to train her right hand to write and feed herself. Initially, she managed to walk a little but then started with Dystonia which spread throughout her body and now she's unable to walk or stand and has to use a wheelchair.  She has to take alot of medication every day to try to help her symptoms.  

Dystonia causes uncontrollable and sometimes very 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 Demi.  Dystonia also results in abnormal postures or movements, with and without tremor.  Life with dystonia is very hard for Demi.  It makes her very uncomfortable and the pain can be pretty bad.  It has turned her life upside down and affected the whole family because she needs 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 Demi has spasms it makes it very difficult to concentrate at school and she can get very tired.   It's very difficult for her friends as Demi can no longer play with them and has to be pushed around by an adult all the time which severely cramps her style.  

In August 2014,she's having an operation called Deep Brain Stimulation (DBS).  The doctors will place electrodes in her brain and wires connect them to batteries implanted in her 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.   Demi's feet are very deformed due to the spasms and we are hoping that the operation will help them to flatten again and that she might be able to stand to help transfer her.  It's very difficult at the moment as Demi isn't able to support herself and it's difficult to move her about.  

We need to buy medical equipment to help her move around the house like a hoist and tracking, she needs an electric wheelchair to help her gain independence and to help her dystonia and sore muscles, we are trying to raise money to buy a hot tub.  As Demi hasn't been active for about 12 months, we're looking to buy other equipment to help her rebuild her wasted muscles.   There is so much out there to help Demi open new doors but things are so expensive and the NHS budget cuts make it either impossible to get equipment or you are on a very lengthy waiting list.

Demi's dad looks after her and he is a single working parent supported by Demi's Nana and grandad and budget is very tight.  Demi has come far but still has a massive journey ahead of her and we need to help her in every way we can to lead as normal a life as she can.  All Demi wants is to be the person she used to be but unfortunately, this will never happen.  It has taken a long time for Demi to accept what has happened to her and she still isn't there yet - she's an active, enthusiastic child trapped in a body that suddenly stopped working overnight.  It is a hard thing to get used to - for all of us.  The best thing we can do for Demi is to help her to be the very best that she can be and to build her confidence and self esteem.  We can do that with your help.  We  would be very grateful for anything you can donate.  Thank you so much for your kindness.

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