A boy denied NHS treatment despite being the only person in the world suffering a super-rare cancer is getting a chance at life – thanks to the caring British public.
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 doctors said he needed a second transplant – or would have just months to live.
But his family claim bosses at NHS England turned down funding applications because it was “too expensive”, and there are “no guarantees”.
His parents Terry, 57, and Sam, 42, set about raising the money themselves and in a month their online funding page has raised £80,000.
Brave Daryl, from Frome, Somerset, has now begun treatment after another donation from his brother, while his family raise the final £20,000 needed for aftercare.
Former soldier Terry said: “If we had not raised the money to pay for Daryl’s treatment it is very likely he would not be with us today.
“We really appreciate every donation.
“We are still angry. It’s not even about paying for the treatment anymore as everyone has helped do this; it’s about the morals of the NHS sat at the top being able to decide they can choose to take a child’s life.
“This means if fundraisers had not helped with this cost Daryl would not be having his treatment and the NHS would have just given him a death sentence.”
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.
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 in June they were told the funding application had been turned down by NHS England – the body which oversees budgets.
“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,” said Terry, who has two daughters and another son
His consultant appealed the decision, but the Individual Funding Request panel at NHS England turned it down again.
But thanks to 1,515 donations from big-hearted strangers – totalling £80,276 – Daryl started his treatment at Bristol Royal Hospital for Children on July 11.
A week later he had his transplant, and he is now recovering in isolation.
Daryl’s aunt Stephanie Townend, who started the fundraising page, said: “It just shows us how important the Just Giving page was and it is now more important than ever that we’re able to raise the funds Daryl needs for his treatment.
“If we hadn’t raised the money he would have died.
“Thanks to the fundraising of everybody we’ve now been able to start the process of Daryl’s treatment.”