Mother 'humbled and amazed' as hundreds donate £6,000 to pay for son's....

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The mother of a severely disabled boy denied a life-changing operation on the NHS has today thanked hundreds of people who donated to help her raise £10,000 to pay for the procedure.

Debbie Foster has already been forced to watch one son die in agony from Leigh's Syndrome - helpless to relieve his pain.

So after hearing a second son had the same rare and terminal condition, she found some solace when doctors said a new operation could relieve his agony.

Jake, 13, has lost most of the movement in his muscles, meaning he is in constant pain and confined to a wheelchair.

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Terminally ill teenager Jake Foster was denied NHS funding for an operation to reduce his pain. But thanks to hundreds of MailOnline readers donating money to his fund, the youngster will be able to have the procedure privately

In the four days since Jake's story appeared on the MailOnline readers helped raise more than £6,000 to take his fund past the Foster's target of £10,000

Jake (pictured with his parents, Debbie and Robert) has a very rare genetic condition called Leigh's Syndrome, which has already killed one of his brothers

But just weeks before he was due to have the operation, NHS bosses refused to pay due to funding cuts.

The denial inspired Mrs Foster to take matters into her own hands, setting up an appeal to gather the money together.

With £3,000 already in Jake's fund, his story appeared on MailOnline last week, sparking a flood of donations.

In just four days readers touched by Jake's plight raised more than £6,000 to take his fund past the £10,000 his family need to pay for the operation.

Mrs Foster said she has been humbled by the kindness shown by people from across the country.

She told MailOnline: 'It very humbling, truly amazing. It restores your faith in people.

'It was so nice to see Jake's story touching so many people. It just shows there are so many good, caring people in this world.

'I want to thank everyone who has donated, it means the world to us.'

'My husband is not an emotional man, but even he had tears in his eyes reading all the messages left and seeing all the donations.

'It was MailOnline that gave Jake's fund the big push it needed. It is amazing the reaction we have had.'
She said raising the money so quickly means Jake will be able to have his life-changing operation this summer.

'I want to thank everyone who has donated, it means the world to us'
- Debbie Foster

While the procedure won’t save his life, it could prolong it significantly and at the very least make it a lot more comfortable.

Mrs Foster, 45, said: ‘All we want to do is make Jake as happy and pain-free as possible and they’ve (NHS) taken that from us.

‘It breaks my heart to hear him cry out in pain at night and not be able to do anything about it. There is nothing worse for a mother.’

It is not known how many weeks, months, or years Jake has left to live, but a child with the genetic disorder is only expected to live to the age of around six or seven.

The mother-of-two, who lost her son Robert to the disease at the age of just four on Christmas Eve in 2000, said: ‘It makes me angry that a topless model is allowed to have a boob job on the NHS for cosmetic reasons or someone can have a tummy tuck, but a poorly child has to suffer.’

Jake (pictured as a child with his older brother, James, who has Asperger syndrome) has lost most of his movement as a result of his illness and it causes him extreme pain

‘If a child is in pain and something can be done about it, how they can be denied treatment?’

Jake’s GP first recommended the procedure, called selective dorsal rhizotomy (SDR), which is often also used to treat children with cerebral palsy.

In October last year he was put on a waiting list for the operation at the Queen’s Medical Centre in Nottingham.

But they received a letter in the post in February, weeks before he was due to have the operation, saying due to NHS funding cuts they could no longer fund it.

BUT THERE'S PLENTY OF MONEY IF YOU NEED A BOOB JOB....

Aspring glamour model Josie Cunningham sparked outrage after her NHS-funded boob job - which has since been reversed - on the NHS

As the Mail reported earlier this year, while children such as Jake - and many suffering with cerebral palsy - are being refused funding for life-changing surgery such as a selective dorsal rhizotomy, there is plenty of cash to pay for cosmetic procedures.
The case of Josie Cunningham sparked outrage when it emerged she had received breast enlargement on the NHS - and, after tiring of her new assets, a tax-payer funded reduction, too.
Ms Cunningham had her 32A breasts enlarged to a 36DD with taxpayers’ money, after saying her flat chest was ‘ruining her life’.
Her operation came after she was recommended for funding by her local GP. Under NHS guidelines, cosmetic surgery should be funded only in rare circumstances when it is needed ‘to protect a person’s health’.
Then there was the case of morbidly obese Diane Wiggett, who cost the NHS £15,000 by having a gastric band fitted - then having it removed when she decided she preferred being fat.

'We were all excited about it and getting ready for it,’ she said.

‘We have tried to fight it, tried to re-appeal saying Jake is a special case but they just said a blanket “no” response. It’s like talking to robots.

‘The people making these decisions aren’t from a medical background, so there’s no talking to them.’

Mrs Foster and her husband, Robert, 52, who live with Jake and his brother, James, 20, who has Asperger’s Syndrome, were forced to try and raise the money themselves and set up Jake's fundraising page online.

Mrs Foster added: 'The initial joy does give way to sheer panic, as well.

'Being a mother, now I am worrying about Jake going into hospital and having the operation, it is only natural I suppose.

Jake, a ‘happy child’ given his circumstances and a Birmingham City Football Club fan, spends his life in a wheelchair and is unable to sit up by himself.

The teenager, who is much smaller than most boys his age, has very stiff limbs and one leg is stuck in one position, causing him extreme pain.

Jake (pictured with his parents) was offered surgery to reduce his pain by cutting some of the nerves in his back. However, the offer of NHS funding was then withdrawn due to funding cuts

Jake's parents, Debbie and Robert (pictured with their other son, James), are now trying to raise £10,000 to pay for him to have the operation

Very little is known about the inherited disorder that affects the central nervous system and there is little by way of treatment.

The SDR operation is the only way Jake’s pain can be relieved without the risk of serious side-effects.

It works by cutting the nerves in his back, enabling his limbs to move more freely and therefore making him a lot more comfortable.

Mrs Foster, who with her husband is a full time carer for her two boys, but also volunteers to help other parents with disabled children, said: ‘Because he is in so much pain, he is not sleeping.

‘It’s all about energy and when they get tired, they’re more prone to getting infections and then their health goes downhill.

‘At the moment he has fits most evenings which is very frightening which keeps him awake.’

Mrs Foster (pictured with her husband and sons, Jake and James) says it is unacceptable the NHS will pay for weight loss surgery and for boob jobs but it will not pay for surgery to relieve the suffering of a dying teenager

Mrs Foster (pictured with her husband, Robert) said: 'All we want to do is make Jake as happy and pain-free as possible and they've taken that from us'

WHAT IS LEIGH'S SYNDROME?

Leigh's Syndrome is a severe neurological disorder which usually starts to show symptoms during the first year of life.
It causes the progressive loss of mental abilities and of movement.
It is usually fatal within a couple of years as it causes respiratory failure.
Severe muscle and movement problems then develop and these cause loss of feeling in the limbs, weakness and balance problems.
Eye, heart and breathing problems are also common in people with Leigh's Syndrome.
The symptoms are caused by patches of damaged tissue that develop in the brains of patients and these lesions are often accompanied by the loss of the nerve coatings.
This reduces the ability of the nerves to activate the muscles used for movement and to relay sensory information to the brain.
The condition occurs in about one in 40,000 babies.
The condition is caused by mutations in one of more than 30 different genes.
Source: Genetics Home Reference

Jake can only say a few words as the condition also affects the respiratory system.

But Mrs Foster said if it wasn’t for his condition, Jake would be ‘a typical 13-year-old’.

‘He’s such a character and very mischievous,’ she said.

‘He likes the baddies in films. Most kids are frightened of Captain Hook and Cruella Deville but from a young age he just thought they were funny.’

There have been several cases this year where poorly children have been refused funding due to cuts.

In March two-year-old Sophie Thomlinson who suffers with cerebral palsy was told she couldn’t have an operation that would help her walk. A Daily Mail campaign helped raise the money so she could have the operation.

Meanwhile, Around 5,400 gastric bypasses and 1,300 gastric band procedures are performed by the NHS each year and in 2012 it spent £3.5million on 790 breast implant operations.

It is estimated Leigh’s Syndrome occurs in one in every 40,000 live births, though certain populations have considerably higher rates.

James Hunter, Clinical Director for Musculoskeletal and Neurosciences, for Nottingham University Hospitals NHS Trust said:  ‘Our exceptional funding request to NHS England for Jake’s surgery was unsuccessful. We continue to meet with the family as they explore self-funding Jake’s surgery.’

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