01:27AM, Thursday 19 April 2012
A six-year-old girl has been refused an operation on the NHS that could save her from life in a wheelchair.
Now her mum and dad are launching a campaign to raise the £50,000 needed.
Genevieve Gregory-Osborne, known to everyone as Vivi, suffers from spastic quadriplegic cerebral palsy which affects her arms and egs.
NHS Berkshire Primary Care Trust has refused to pay for a revolutionary new operation known as Selective Dorsal Rizotomy (SDR). The operation involves cutting nerves affected by the patient's condition, leaving unaffected ones intact so that the child gradually relearns how to walk, balance and move.
But it costs £25,000. Cash is needed for the operation and a three-week stay in hospital, intensive physiotherapy for two years - plus 20 years of follow up.
Vivi goes to Oakfield First School in Imperial Road, Windsor and says she wants to be a dancer when she gets better.
But mum Helen, of York Avenue, Windsor - former owner of the Glasshouse shop - said: "Walking has become more difficult and painful. One operation has already failed to improve her condition. The fear for her is she will be reliant on a wheelchair before long. We are desperate for this not to happen."
Helen and her husband - local builder Terry - are determined Vivi should have the new operation that has had extraordinary results in the USA and is now being performed by a surgeon in Bristol.
Helen knows of a child from Newbury whose operation was paid for by the NHS and says her daughter is very much the victim of the 'postcode lottery.'
But she said: "We don't want this to be a negative journey, we want to have fun with the fundraising and fully appreciate all the efforts that people are making.
"We know there are thousands of causes competing for the generosity of people and organisations. But having this operation will be life changing for Vivi, enabling her to stand on her feet without pain or without overbalancing, walk, and maybe - even beyond our wildest dreams - run."
A series of events are already being organised and a just giving has been set up online. Visit www.justgiving.com/Vivisventure
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