Jamie Parker's fight for £30,000 operation
JAMIE Parker wants to be able to walk again. He wants to be able to run and play with his friends and ride a bike.
But the six-year-old cannot do that because he has cerebral palsy and spends most of his time in a wheelchair.
This could be changed, however, if Jamie has a complicated and risky operation which involves surgery close to his spine, testing the nerves and cutting away those not doing their job properly.
However, there is no blanket coverage of the dorsal rhizotomy surgery by the NHS, which means his parents have to pay for it privately in order to see their boy walk again without the spasms which hamper his movements.
Jamie was diagnosed with cerebral palsy when he was just 18 months old, a result of him being starved of oxygen either while in the womb or when he was born. The operation to resolve his problems will cost £22,000 at Frenchay Hospital in Bristol – and there is an 18-month waiting list. It will also involve £8,000-worth of physiotherapy.
Dad Andy, who runs a pet shop in Lydney, said: "The NHS will pay for expensive short-term solutions, like Botox to relax his muscles and orthopaedic surgery.
"But sadly the selective dorsal rhizotomy surgery he needs to stop the effects of the cerebral palsy is not covered.
"I am told it will be within five years or so but unfortunately he has to have the surgery as soon as possible because of his age. The surgeon is going to apply for emergency funding through the NHS but he said he is not hopeful.
"Without the operation, Jamie's mobility will deteriorate and the great likelihood is that he will end up wheelchair-bound having to undergo many painful operations on his hips, knees, spine and ankles."
Andy and Jamie's mum Louise, are separately trying to raise some cash to fund the operation by doing skydives and running the length of the country in a relay. They have set up a Just Giving page, www.justgiving.com/Andrew-Parker10 which will direct all money raised to Tree Of Hope Children's Charity. The charity will then use the money to pay for the operation.
Medical director for NHS Gloucestershire, Dr Liz Mearns, said: "NHS Gloucestershire is committed to achieving the best possible health outcomes for all its patients. Cases such as these are complex, and we have to take into account both the current clinical evidence available and individual circumstances. It is understandable that parents and families want the best for their children and loved ones and we respect their wish to pursue all potential options to secure funding for treatments.
"This procedure is not routinely funded by NHS organisations, but there is a process to allow individual funding requests to be looked into to determine if there are exceptional circumstances."