Up until October 2012 Demi was a happy, healthy and active 9 year old who loved swimming. street dance and taking her pet dog for daily walks. In November 2012, 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 began to slowly recover, learning to swallow and talk and teach her arms to work again properly. However, then began suffering from Dystonia which spread throughout her body and she’s now confined to a wheelchair
Life with dystonia is very hard. It makes Demi very uncomfortable and the pain can be pretty bad. It has turned her life upside down and affected her family because she needs constant support to do even simple things that people take for granted like washing, dressing, eating or even just holding a book. When she has spasms it makes it very difficult to concentrate at school and she can get very tired.
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 Demi. Dystonia also results in abnormal postures or movements, with and without tremor.
After nearly 2 years of trying to get funding for an accessible bathroom and other equipment for Demi from the local authority we've managed to obtain some but not enough for her needs or for those of her carers to handle her safely. Sadly with cuts and so many people in need, budgets just aren't big enough in the pot for the disabled in Calder dale. Demi needs a special bath not just for her personal hygiene but mostly for relief from the terrible pain she suffers from her dystonia - warm water relieves and relaxes her muscles and helps with her spasms
A rise and fall bath is about £11k but Demi will also need additional supports with hoisting etc to hold her in the bath. I am trying to raise enough money for the bath with supports and the shortfall between what the local authority will grant for a bathroom extension and what we will need.
Ideally the bathroom will be big enough to accommodate a bath, changing bench, rise and fall sink, close-o-mat toilet and hoist. With your help we can give Demi the bath and bathroom that she needs and deserves now that she is growing into a young lady.
Thank you very much for your support
We are also raising funds for other equipment to make Demi’s life easier and to help her remedial recovery therefore any unused funds would be put towards that or alternatively returned to the organisation donating money if required.
Life with dystonia is very hard. It makes Demi very uncomfortable and the pain can be pretty bad. It has turned her life upside down and affected her family because she needs constant support to do even simple things that people take for granted like washing, dressing, eating or even just holding a book. When she has spasms it makes it very difficult to concentrate at school and she can get very tired.
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 Demi. Dystonia also results in abnormal postures or movements, with and without tremor.
After nearly 2 years of trying to get funding for an accessible bathroom and other equipment for Demi from the local authority we've managed to obtain some but not enough for her needs or for those of her carers to handle her safely. Sadly with cuts and so many people in need, budgets just aren't big enough in the pot for the disabled in Calder dale. Demi needs a special bath not just for her personal hygiene but mostly for relief from the terrible pain she suffers from her dystonia - warm water relieves and relaxes her muscles and helps with her spasms
A rise and fall bath is about £11k but Demi will also need additional supports with hoisting etc to hold her in the bath. I am trying to raise enough money for the bath with supports and the shortfall between what the local authority will grant for a bathroom extension and what we will need.
Ideally the bathroom will be big enough to accommodate a bath, changing bench, rise and fall sink, close-o-mat toilet and hoist. With your help we can give Demi the bath and bathroom that she needs and deserves now that she is growing into a young lady.
Thank you very much for your support
We are also raising funds for other equipment to make Demi’s life easier and to help her remedial recovery therefore any unused funds would be put towards that or alternatively returned to the organisation donating money if required.
Organizer
Jo Stockings
Organizer