Only Boy In The World With Rare Cancer Wins Battle Thanks To Crowdfunded Treatment Denied By NHS

March 6, 2017 | by | 0 Comments
Daryl Allinson, 13, from Frome, Somerset.

Daryl Allinson, 13, from Frome, Somerset.

A boy who was the only person in the world to suffer from a super-rare cancer has made a remarkable recovering thanks to crowdfunded treatment denied by the NHS.

Daryl Allinson, 13, was struck down with a rare form of leukaemia in 2015 but went into remission thanks to a bone marrow transplant from his brother Bradley, 22.

Tragically, the cancer came back and doctors said he needed a second bigger transplant – or would have just months to live.

But NHS funding bosses ruled it would not pay for the £80,000 treatment and the family accused the service of “leaving him to die”.

Kind-hearted strangers donated the entire cost and eight months on the teen is back at football training for the first time in years – and is due back in school this month.

File photo of Daryl Allinson (centre), 13, with his family, Terry Allinson, 57, Sam, 42, his brother Brad, 22.

File photo of Daryl Allinson (centre), 13, with his family, Terry Allinson, 57, Sam, 42, his brother Brad, 22.

His mum Sam, 42, from Frome, Somerset, said: “He’s proving them wrong, those who made the decision there wasn’t enough chance of success.

“He’s always been so happy, always smiling, and he;s still very determined. He’s always been determined.

“He tells people he’s getting better, that he’s feeling better and that’s great to hear each time.

“People still come up to us now and say they can’t believe that decision was made to refuse to find the treatment.

“The were wrong to say that to him. I’m still angry about it – to play with a child’s life like that.

“We were in bits at the decision back on that weekend, and my sister Stephanie got it together to start a fundraising appeal.

“I just simply can not thank everyone who donated enough, and until the end of my life I will not be able to thank everyone enough.

“We’re not getting ahead of ourselves and we are taking each day as it comes.”

Daryl  when he was in hospital in Bristol during his first treatment for a super-rare cancer.

Daryl when he was in hospital in Bristol during his first treatment for a super-rare cancer.

Daryl was a promising young footballer before his coach noticed he was getting breathless too easily, in April 2015.

When he became very weak, his parents took him to hospital where blood tests revealed he had a very rare form of leukaemia – Atypical CML Monosomy 7 in Malignant Clone with Constitutional GATA2 Deficiency.

His family say doctors at Bristol Children’s Hospital and Great Ormond Street have never heard of another person in the world with the condition.

The schoolboy had a bone marrow transplant in July that year, and initially it was a major success, with the little lad “perking up”.

Daryl was told he was in remission in April last year, but just weeks later doctors discovered he had relapsed.

The family said his consultant told them he needed another bone marrow transplant – and this time doctors would use a stronger chemotherapy treatment.

Daryl  when he was in hospital in Bristol during his first treatment for a super-rare cancer.

Daryl when he was in hospital in Bristol during his first treatment for a super-rare cancer.

But then they were told the funding application had been turned down by NHS England – the body which oversees budgets.

The family claim they were told it was “too expensive”, and there are “no guarantees” so raised £87,000 themselves for the operation in July last year.

He is not yet officially in remission but no longer has intravenous drug lines, is back to school in a few weeks, and only attends hospital for blood checks.

Speaking at the time the funding was rejected. a spokesman for NHS England said individual funding requests are not routinely funded by the NHS.

He said he could not confirm the reasons Daryl’s application was rejected but added: “These are difficult decisions, which is why they are taken by clinicians and experts on the basis of evidence on which treatments are effective.”

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