Dashed hopes: Shannon's life-changing surgery has been cancelled with just days to go due to NHS 'budget cuts', her family have been told.
- Shannon Bowley can only move around on her bottom or with a frame
- Was due to have surgery this Friday to loosen her muscles to help her walk
- But now NHS England says there is no funding for the operation
- Family now fear they will have to raise £7,000 for treatment in America
Shannon Bowley can only shuffle around on her bottom or take a few slow steps with the aid of a walking frame.
She was due to have a life-changing operation this Friday which would have loosened her muscles to help her walk independently. But just six days before surgery, her family were dealt a devastating blow when they received a letter informing them that NHS England had cancelled funding for the operation.
Shannon's grandmother and full-time carer Samantha Jones, 42, said her grand-daughter had also been through a year of painful procedures in preparation for the surgery.
Unfair: Shannon is one of eight children with cerebral palsy who have had operations cancelled just weeks or months in advance at Nottingham hospitals.
'After signing the consent form I thought it was a done deal. I felt like the whole world had fallen through. Everything we had done was pointless.'
Shannon's family are certain the operation would have had a huge impact on her life and have lambasted NHS bosses for cancelling funding.
Mrs Jones said: 'It would change our lives immensely - it will give her the ability to play with other children, to run in the playground and just to have a better quality of life forever.
'She would be able to lead an independent life. 'I can't believe that they will allow surgery for people who have done things to themselves, but not to a child that was born trapped in a disabled body - I can't fathom it.
'If it cannot go ahead, I would take her to any hospital - I would travel to the ends of the Earth - one way or another she will have it even if it kills me.'
She added: 'We now have to raise £7,000 to have the operation done privately but it could be even more if we have to fly to America.
'We are determined to raise the money, we'll do anything. It feels like hospital have raised our hopes only for them to be cruelly dashed days before the surgery.
'I am willing to do absolutely anything - I would live on toast and beans forever and I have lined up a loan with my bank.'
The procedure - called selective dorsal rhizotomy - can improve mobility and can give a new lease of life to young sufferers.
Doctors cut through nerve connections in the spinal cord - decreasing the messages sent from the brain which relaxes the muscles.
Shannon, also lives with her mother Amy, 27, and her three-year-old brother Oliver in Aspley, Nottingham.
She weighed just over 4lbs when she was born and just 17lbs when she was two-and-a-half-years-old because the cerebral palsy slowed her development.
She went through years of painful surgery including a brain scan and having a catheter inserted in her spine.
Mrs Jones added: 'Every aspect of her life I have to do for her. She can only walk with me holding her under her arms or with a special frame.
Hope: The procedure Shannon was due to have is called selective dorsal rhizotomy. This can improve mobility and can give a new lease of life to young sufferers.
'We had taken her out of school for a week so she did not come into contact with infection, she's on antibiotics and she's already had her bed moved downstairs so we've got a ready-made ward for her.
'She's amazing. She's bright, clever and is a real little character. She's a very brave girl, she's had a lot to put up with and she's had a lot of surgery. She's so kind.'
Shannon is one of eight children with cerebral palsy who have had operations cancelled just weeks or months in advance at Nottingham hospitals.
NHS England said money for the surgery was discontinued last April but Shannon's family have written to the hospital and are planning to appeal the decision.
A petition against the cancellation has attracted more than 400 signatures in just 24 hours.
An NHS England spokeswoman said: "We are now working with Nottingham University Hospitals NHS Trust to understand why this has taken place and regret any distress which may have been caused to the families affected.'
Health bosses from NHS England say the procedure was removed from a list of publicly-funded operations in April 2013 after a consultation.
Dr Stephen Fowlie, medical director at Nottingham University Hospitals NHS Trust, said: 'We apologise for the disappointment and distress caused by the cancellation of surgery at such short notice.
'We had been hopeful that we would reach agreement to continue a funded programme.
'We have, to date, been unable to secure NHS funding and we have therefore, regrettably, had to stop our programme.
'We continue to explore options which would enable those patients who had received dates for their surgery to have their operation at our hospital.
'This includes the possibility of parents self-funding the operation. We believe that this decision by NHS England has prompted a number of families across the country to explore self-funding this treatment.
'We will be discussing with parents alternative treatments that are funded by the NHS.'
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