Parents of girl, four, with rare brain tumour fly her to Germany for same proton beam therapy that saved Ashya King… but this time NHS says it WILL pay £25,000 bill
- Amelia Elphee, four, was struck down with a rare brain tumour in June this year
- A week later she underwent a seven-hour operation to remove a 2cm growth
- She is now flying to Germany to undergo proton beam therapy, a less damaging form of radiotherapy, at a clinic in Essen, Germany
- The controversial radiotherapy saved another little girl in 2014 – but unlike last time the NHS said it supports treatment and is paying £25,000 bill
A four-year-old girl with a rare brain tumour is set to fly to Germany to have a controversial form of radiotherapy which saved another little girl in 2014- and unlike last time the NHS said it supports the treatment and is paying family’s £25,000 bill.
Amelia Elphee was diagnosed with a ‘neuroepithelial’ brain tumour in June this year following the sudden onset of seizures and a week later underwent a seven-hour operation to remove a 2cm growth in the upper part of her brain.
Now, in the week of her fifth birthday, Amelia, who is one of only 30 people in Europe diagnosed with the cancer, is set to have proton beam therapy – a less damaging form of radiotherapy at a clinic in Essen, Germany.
Amelia Elphee,aged 4, was struck down with a rare brain tumour in June this year
Proton beam therapy is not readily available in the UK and hit the headlines in 2014 when Ashya King’s parents removed the then five-year-old from hospital in Southampton to fly to Prague for the therapy, which helped him to become cancer free, against the advice of British doctors.
Cancer doctors now accept the treatment is effective in some cases.
The NHS has made a u-turn on its view towards proton beam therapy and is paying for Amelia’s treatment, at an estimated cost of £20,00, as well as the family’s other expenses such as flights and accommodation.
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Speaking as the family, of Queensbury, West Yorkshire prepares to fly to Germany, Amelia’s mother Vicky, said: ‘We know we’re lucky to receive it through the NHS, and that many other families have to fight to get it.
‘When Amelia first suffered a seizure, I thought she may have simply overheated, or that she might have epilepsy.
‘Never once did I think I’d be told she had cancer. To hear those words left me dumbstruck, numb. I just couldn’t take it in.
‘But Amelia has been an inspiration throughout her treatment. She’s been so strong. In fact, when she woke up from surgery the first thing she said was, ‘Can I go to the playroom now?’
‘And we’re optimistic of a successful outcome following proton beam therapy.’
Unlike traditional X-ray radiotherapy, proton therapy uses an accelerated ‘pencil beam’ of positively-charged particles, travelling at 100,000 miles per hour, to target the area with pin-point accuracy.
She is now flying to Germany to undergo proton beam therapy, a less damaging form of radiotherapy
The NHS is supporting Amelia’s treatment and she has funding for the treatment
The x-rays used in conventional radiotherapy pass all the way through the body, which has the risk of damaging sensitive tissues around and behind the tumour site – in Amelia’s case, the brain.
Whereas, in proton beam therapy, the particles stop at the tumour site, reducing radiation damage to nearby organs.
Although proton beam therapy is currently unavailable in the UK, the NHS is building two centres to provide it.
Vicky, a learning disability nurse and youth worker, says their worst nightmares were realised when she received a call at work from Amelia’s primary school, Russell Hall, to say she was unwell on June 20 this year.
Amelia was taken to Calderdale Royal Hospital in Halifax where she began having another seizure in front of a paediatrician.
Brett King and his wife Naghmeh took Ashya, then aged five and suffering from a rare brain tumour (pictured), from Southampton General Hospital without doctors’ consent in order to seek pioneering proton treatment in Europe
An initial MRI scan was performed the following day which revealed of problem.
‘As you can imagine, we were all hit hard,’ said Vicky.
‘My son Lewis can be quite slow to process information. It took a while for the situation with his sister to really sink in.
‘But he eventually told me, ‘I want to know what’s going on’. He was upset.
He broke down in tears at school a few times with worry.
‘The truth is, no-one can give you the answer to the question we all asked – ‘Is she going to die?’ You just have to stay strong and keep believing.
‘Thankfully Amelia continues to amaze us all with her bravery.’
Although Amelia’s treatment has been funded, the living costs for the family in Germany have not been
Amelia underwent craniotomy surgery to remove the tumour on June 27 and thankfully surgeons were able to remove all of it.
Two days later Amelia was back at home making another promising recovery.
Now Amelia is set to spend six weeks in Germany having proton therapy.
Although the treatment has been funded, the living costs for the family in Germany have not been.
So Vicky, who’s had to take time off work to go to Germany, set up a crowdfunding platform in order to raise cash.
Remarkably, she raised more than £6,000 in a matter of days – thanks in part to donations from Leeds United fans, after Amelia’s football-mad granddad Alan Riley appealed to fellow supporters.
Vicky added: ‘We’re obviously nervous about what happens next. It’s going to be horrible being away from home for so long.
‘But we’re all hopeful we can put an end to this nightmare once and for all.
‘And I want to share what we’re going through, so that others in the same position can get the support they need, too.’
A recent Freedom of Information Request undertaken by the respected Proton Therapy Center in Prague, where Aysha King had her treatment, revealed how the NHS has approved 737 patients to travel abroad for proton treatment since 2008.
Leading European oncologist Dr Jiri Kubes, medical director at the Proton Therapy Center in Prague, said: ‘While the NHS acknowledges the benefits of Proton Beam Therapy, and is building its own centres, they will still only be able to treat a fraction of those who might benefit from it, while many people will be turned down for the treatment because of the very limited indication criteria.
‘There’s still a long way to go before patients in the UK have widespread access to it.
‘But the general public is becoming increasingly aware of the benefits of Proton Beam Therapy.
‘It’s highly effective in treating tumours in extremely sensitive areas of the human body and it has also been proved that proton therapy reduces the risk of secondary cancers by more than half, compared with traditional radiotherapy.’
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