Six-year-old left to find £40,000 for NHS operation giving her chance to walk
PUBLISHED: 12:30 12 March 2015
© Nigel Sutton email email@example.com
A six-year-old girl who was told she could have life-changing surgery allowing her to walk for the first time is facing a race against the clock to find £40,000 after NHS bosses refused to fund her surgery.
Orly Landeck suffers from cerebral palsy and has had to face the prospect of spending the rest of her life in a wheelchair.
The only help she receives from the NHS is an hour of physiotherapy every two weeks, an hour of occupational therapy twice a term and a basic NHS wheelchair.
But doctors at Great Ormond Street Hospital (GOSH) recently gave the little girl new hope after saying she was suitable for a pioneering operation that could allow her to walk unaided for the first time.
The Selective Dorsal Rhizotomy procedure involves cutting nerves in the spinal cord to improve muscle spasticity. It has seen remarkable success rates and is likely to mean the difference between a lifetime in a wheelchair and having hugely improved mobility.
But despite the eagerness of surgeons at GOSH to operate, NHS chiefs have refused to pay for the procedure saying only certain cases of cerebral palsy will receive funding.
Her parents – two doctors from Hampstead Garden Suburb who have dedicated their entire working lives to the NHS – say they are now facing a race against time to find the £19,000 to pay for the operation and the £20,000 needed for follow-up physio.
A public fundraising appeal has so far raised £5,500.
Orly’s father, Dr Amir Landeck, said: “At the moment, there’s nothing else that would make a real difference to my little girl’s life. This operation is the only option.
“Currently I have to carry her everywhere and if there’s a chance of her having a future with greater mobility, we’ll take it.
“My partner Gill and I thought long and hard about whether to launch a fundraiser.
“We have been worried people will think because we’re both doctors we can afford it.
“But we have had to spend all our life savings on care for Orly because the NHS doesn’t provide enough. And we have two other children to care for. We’ve spent our lives working for the NHS and when we need help it’s nowhere to be seen.”
Mother Dr Gill Wray added: “Our health service’s attitude to cerebral palsy is pretty shocking.
“The individual people are brilliant but they are stretched and there’s not enough funding.
“After we spent thousands and thousands on private physio for Orly she made the progress needed to be suitable for this operation.
“But then we’re told the NHS wouldn’t fund it because of ‘current guidelines’ – despite specialists recommending it.
“It’s led to a situation where we’ll have an operation carried out by an NHS surgeon, at an NHS hospital and using NHS resources – but which is funded by us.
“There are hundreds of people in the same situation as us having to launch fundraisers to pay for operations for their children because the NHS won’t. It needs to change.”
If you would like to donate to Orly’s fund, visit gofundme.com/mgwu2o.
If you value what this story gives you, please consider supporting the Ham&High. Click the link in the orange box above for details.