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.
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.
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.”