A boy who is the only person in the world to suffer from a super-rare cancer has been “left to die” – after NHS bosses refused to fund his treatment.
Daryl Allinson, 13, was struck down with a rare form of leukaemia last year, but went into remission thanks to a bone marrow transplant from his brother Bradley, 22.
Tragically, the cancer came back and five weeks ago doctors said he needed a second transplant – or would have just months to live.
But his family claim bosses at NHS England turned down a funding application for his treatment last week because it is “too expensive”, and there are “no guarantees”.
The health body said Daryl‘s clinician can reapply – but his parents Terry, 57, and Sam, 42, say time is running out.
The family, from Frome, Somerset, is now frantically trying to raise £70,000 to fund the aggressive chemotherapy and second bone marrow transplant themselves.
Blood cancer charity Anthony Nolan has backed the family and is urging NHS England to reconsider and acussed bosses of “denying him a second chance of life”.
Former soldier Terry said: “When we heard he would need another transplant, we were told there would be no problem getting funding. We were delighted.
“But when we got the news it was turned down, we were devastated. It really took us back.
“They said the chemotherapy would cost too much, and because of his unique condition our consultant couldn’t give them a percentage of the likely success rate – that there is no guarantee.
“That doesn’t make sense to me. Daryl will die if he doesn’t get this transplant.
“The consultant said he has anything from two months left and he is getting really really tired – and that was five weeks ago.
“As far as I am concerned, the NHS has left my son to die.”
Daryl was a promising young footballer before his coach noticed he was getting breathless too easily, in April last year.
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 last year, and initially it was a major success, with the little lad “perking up”.
Daryl was told he was in remission in April, but just weeks later doctors discovered he had relapsed.
Five weeks ago the family said his consultant told them he needed another bone marrow transplant – and this time doctors would use a stronger chemotherapy treatment.
Terry, who has two daughters and another son, said: “He said he would have to apply for more funding, but there wouldn’t be any problems.
“They had a nationwide online meeting about it, and every single doctor said ‘give Daryl the transplant’.”
But then on Friday they were told the funding application had been turned down by NHS England – the body which oversees budgets.
Sam, who is a carer, said: “It’s the pen-pushers at the top of the NHS that have said no to funding Daryl‘s second transplant.
“They are saying my son has to die. It’s been hard taking this news in.”
Terry added: “He’s so brave. Daryl is always smiling and he’s the sweetest little boy you could ever meet. We’re feeling very emotional.”
Richard Davidson, director of engagement at charity Anthony Nolan, urged the NHS to reconsider.
He said: “We are extremely saddened to hear that Daryl will not receive funding for his second transplant, despite a recommendation from a senior clinician that he should receive one.
“There are many people alive today, leading fulfilling and active lives with their families, because they had a second transplant.
“If a patient is willing to undergo the procedure and if their consultant believes a transplant is their best option it is truly devastating that NHS England will deny them a second chance of life.
“We strongly urge NHS England to reconsider this decision.”
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 said his medical team could reapply.
He 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.
“Daryl‘s specialist has been informed of the reasons behind the initial decision, and is able to resubmit a revised request.”
The family are worried time is running out, and have set about fundraising the cash themselves.
To donate, please visit: https://crowdfunding.justgiving.com/stephanie-townend