£110k race is on to save five-year-old Nell ‘denied life-saving proton beam therapy by cruel NHS penny-pinchers’
Nell has been refused funding for proton beam therapy because her case is deemed "unsuitable"
THE heartbroken parents of a little girl blocked from having life-saving cancer treatment have blasted the NHS for “playing with her life”.
Nell Connick, five, who has a rare and fast-growing tumour in her spine, has been refused funding for proton beam therapy because her case is deemed "unsuitable" by health service pencil pushers.
Charity , which is now desperately trying to raise funds for her treatment, says the NHS is deliberately blocking attempts to give her the therapy privately in the US.
Founder Mike Hyman said the NHS has contacted a clinic in Oklahoma and ordered them not to take patients from his charity – or risk losing all NHS referrals.
Frustrated mum Emma of Swansea, South Wales said: “We want to know why they won’t give her the treatment. They said she just doesn’t fit the category.
“We were just so angry because they couldn't give a reason why.
“It’s a lottery and they’re playing with my daughter’s life.
THERAPY THAT SAVED ASHYA
THE desperate parents of Ashya King snatched their son from an NHS hospital in 2014 in a bid to get him proton beam therapy.
The five-year-old had been diagnosed with a brain cancer called medulloblastoma.
Brett King, 52, and his wife Naghmeh, 47, disagreed with docs wanting to treat Ashya with conventional radiotherapy.
They claimed proton beam therapy would be less harmful.
The treatment uses sub-atomic particles to target and kill cancer cells, causing less damage to surrounding areas.
But it is not clear whether the therapy is as effective at destroying cancer cells as conventional radiotherapy.
The Kings were arrested in Spain before being freed with The Sun’s help. Ashya got pioneering proton beam therapy in Czech capital Prague.
In March last year a scan showed no evidence of a brain tumour. And in January the youngster, of Southsea, Hants, was declared well enough to attend school full-time.
“It’s disgusting, I’m gobsmacked this is happening. I’m shocked and scared.
“We shouldn’t have to be fighting to get life-saving treatment for my daughter.
“We’re stuck in a nightmare.
“I think the NHS are corrupt and liars. The personal touch is not there.
They don’t give a damn about Nell.”
Emma, and dad David, a policeman, contacted charity boss Mike after they were refused the proton beam treatment for Nell.
It’s a lottery and they’re playing with my daughter’s life
Mike contacted the same clinics used by the NHS in America and was “disgusted” when they told him the NHS had warned them off dealing with him.
Mike said: "They're playing God with a five-year-old child's life. The way she has been dealt with is inhuman.
"Why would the NHS want to stop parents reaching out for something that they can't offer? What right have they got to prevent families from doing the best for their children?
"Parents will fight tooth and nail for their children. If there's an alternative treatment out there which might work, of course they will want to try it.
"Even if it doesn't work, at least they can say 'we tried'. If they don't and the child dies, they will spend the rest of their lives thinking 'if only'.
"We've sent 13 kids for proton beam therapy, all of whom were deemed 'hopeless' by the NHS, and every one of them is alive and well to this day.
"The NHS doesn't want us making them look stupid by saving the lives of youngsters they'd written off."
Proton beam therapy, which saved the life of little Ashya King two years ago, is very expensive and can only be done at clinics overseas.
Nell and her parents part-time finance worker Emma, 37, and David, 42, will fly to Prague on Thursday for treatment paid for by Kids 'n' Cancer.
Yesterday they criticised the NHS for failing their “beautiful” daughter.
Speaking from their home in Swansea, south Wales, mum Emma said: "Nell was such a bubbly little girl, had a swimming badge, and was doing ballet, then suddenly had this pain in her arm.
“We took her for tests and eventually they did a scan.
“It just didn’t feel real. Within half an hour of the MRI they said there was a tumour in her neck and it had been there a while.
“I just cried. It’s not something you expect to hear at all.
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“She had bruises on her because she always bruised easily as a baby.
“I was more worried they would try and get social services to take her away. I never thought it would be something like that. It was devastating.”
The parents, , were told that she could receive radiotherapy and chemotherapy but that she did not qualify for ground breaking proton beam therapy.
Emma added: “The treatment we’ve received from the NHS has been nothing short of disgusting up to this point. It’s just been a catalogue of inaccurate diagnoses, hospital trips and lies.
"We’ve been told different things from everybody we’ve seen and have been passed around countless times, sometimes just because of people being on holiday.
"Between scans, we were initially told by one doctor that Nell’s tumour had barely grown, and then next time around a surgeon told us it had suddenly grown rapidly. What are we to think?
"We decided enough was enough a few weeks ago, and got in touch with Kids ‘n’ Cancer. I don't know where we'd be without them."
David, who works in CID for South Wales Police, added: “As a parent you want the best for your child and the best medical help out there.
“We don’t feel we got that with the NHS and had to seek alternative arrangements, we’ve been left disappointed and confused.
“It’s affected all our family.
“When we find out Nell was ill it was just absolute and total shock. We’re still in shock now, it’s been a whirlwind since.”
Kids 'n' Cancer is now hoping to raise £100,000 to pay for the course of treatment, which can take up to three months.
A source at NHS England last night said: "We are trying to work with Kids 'n' Cancer but it has been a difficult relationship.
"We certainly wouldn't seek to block children receiving the treatment they need.
"Unfortunately, proton beam therapy is being seen as a silver bullet miracle cure, which it is not. In many cases there are better options available. Every case is assessed individually."
To help Nell’s appeal, and the other appeals for children Kids ‘n’ Cancer are currently helping to find funding for Proton Therapy treatment visit or