Portishead family try to raise thousands for ill son’s treatment after NHS refuse to pay
PUBLISHED: 06:16 13 February 2017
A Portishead family needs to raise £26,500 for pioneering treatment which could ensure their nine-year-old son can enjoy the best life possible.
Josh Walters was born 11-and-a-half weeks premature and while he was still an infant, doctors realised he had cerebral palsy (spastic diplegia) which affects mobility.
The NHS has offered a ‘life-changing’ procedure to more than 100 people with a condition like Josh’s, but is refusing to pay for his operation, leaving his family to call on it to make a pragmatic decision.
The surgery would immensely improve Josh’s quality of life, potentially for the next 70 or 80 years of his life, and in his father’s own words would reduce Josh’s need for public healthcare in the future.
Josh’s early days were spent in Southmead Hospital’s intensive care unit but he was released home with his parents, although needed extra oxygen.
Josh was a little slower at starting to walk, but not significantly for any underlying issues to be apparent.
However his father Andy Walters said: “Then we started to notice a few movement challenges – for instance he was just using his left hand.”
Tests would reveal Josh had a mild form of cerebral palsy.
Andy added: “It could have been so much worse. We see some children who have a mild version like Josh and others who are in a wheelchair.
“We were grateful and took the news in a positive way.”
Josh and his family’s positivity enabled him to live the life you might expect of any nine-year-old boy.
He plays for a junior side of Portishead Town Football Club, like his younger brother Kasey. He attends cubs and Portishead Primary School and is a highly intelligent youngster, says Andy.
However, while Josh takes the illness in his stride, it does not mean he is unaffected by it.
Andy said: “He has quite a good quality of life, but he is in a bit of discomfort.”
His movement is limited somewhat and it puts extra pressure on parts of his body, especially his ankles, which often leave him in some pain, albeit manageable.
The older he gets though the more pronounced those problems will become – the supple and agile nature of a nine-year-old’s body is far greater than someone who is 69 for instance.
Therefore, when his family learned of a new NHS technique which could help him for the rest of his life, they were ecstatic. Through spinal surgery and by severing sensory nerve roots, neuro-surgeons can relieve the spasticity in his legs.
Andy says the NHS has done about 140 such operations successfully in the past two years but because it is relatively new it has stopped paying for them to be carried out while its impact is reviewed.
The operation has maximum benefits for children aged about 10 and therefore the Walters have started fundraising for private treatment.
About £26,500 is needed with potentially more required for post-surgery physio to ensure maximum benefit, and the family launched a campaign on January 31.
In little more than a week £10,000 has been raised, which has left the Walters family stunned.
Andy said: “We are overwhelmed by the support. The local community has been fantastic.”
He works for an IT firm and colleague in the Netherlands and Germany have also pitched in.
Other charitable fundraisers are planned in the coming months to boost the total.
People can donate via the Operation Josh Facebook, or by texting OPJO49 £5 to 70070.
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