Nancy and I will be shaving all our hair off. We are going to do it in 2 stages as we don't have much time before her surgery ( as it was brought forward 2 weeks).1st stage will be a funky wee cut with part shaved. Stage 2 will be all shaved off on Saturday 4th March. Nancy needs her hair shaved off as she is having Deep Brain Stimulation brain surgery  on Tuesday 14th March in London at Evelina Childrens Hospital . I am supporting her so she doesn't feel lonely or awkward with no hair. We want to raise money for The Dystonia Society and also awareness of the condition.

Nancy has a working diagnosis of Primary Dystonia.  Dystonia is a neurological movement disorder. In which faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures. Sometimes the symptoms are accompanied by dystonic tremor. There is no cure for Dystonia and more research is needed. Nancy has no control over what is happening to her body and continues to deteriorate in her mobility.skills and abilities she once had.

Nancy will be having Deep Brain Stimulation (DBS) a type of brain surgery that will insert electrodes into her brain and will be wired to a box that requires charging that will be placed in her belly. This will hopefully send the right signals from her brain to her muscles to help them work properly or at least it's hoped it will improve her walking and stability a little and dampen down her tremors and shaking caused by Dystonia. There are no certainties or guarantees of the outcomes.

wee bit of background;

Nancy was developing 'normally' so to speak. A little late at walking and speaking but she had a very helpful big brother that did things for her and got her things. So there was nothing to worry about or think something wasn't quite right. Until Nancy started to go up on her tip toes around 2 1/2 years old and continued to do this but she started to fall a lot and it could be as much as 40 times a day easily. After much pushing and persistence that this wasn't normal. Nancy later got splints made to try keep her feet flat and legs supported. This didn't work well Nancy has had both legs in plaster casts ( but she still managed to climb to the top of a very large climbing frame, she's very determined :) ) specialist shoes, more splints, underwent Botox injections in her legs several times ,physiotherapy and more tests, scans and general genetic testing, all where fine. No one knew what was going on, she baffled the professionals involved. Nancys walking and speech has deteriorated she now uses a wheelchair most of the time and occasionally her walker but this is very difficult for her now. She has now lost what little verbal ability she had since being diagnosed. Nancys Neurologist was amazing and he suspected some form of Dystonia in March 2014. We got a referral to a specialist in London and on October 2015 we met his team and Primary Dystonia was mentioned as well as Deep Brain Stimulation. It is unknown what the cause of Nancys Dystonia is as she doesn't have the gene associated with it but more research is required into the condition.It's been a long 18 months wait since then and as mentioned Nancy has got worse.

Nancy is an amazing wee girl who is very determined and fiercely independent and has a wee wicked sense of humour. She has been through so much in her wee life so far. She has been so brave and amazing throughout all the test and procedures she has had to endure. She is my inspiration and I will do all I can for her.

Thank you for you support it means so much to us.

Nancy and Lyn (mummy) xxx

 Nancy has a wee facebook page if you want to keep updated or know more about Dystonia   https://www.facebook.com/NancysGarden/

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