Parents of only child in Britain with rare form of leukaemia say NHS has condemned him to death by refusing £80k treatment
Family and friends are now trying to raise funds so Daryl Allinson can be treated privately
THE parents of a leukaemia-suffering child have accused the NHS of condemning their son to death after it refused to fund his treatment.
Daryl Allinson, 13, is the only child in the UK with a rare form of the disease.
And doctors say without a second bone marrow transplant the teenager may only have two months to live.
But NHS pen-pushers have decided against funding Daryl’s urgent treatment for the condition, which is called Atypical CML Monosomy 7 in Malignant Clone with Constitutional GATA2 Deficiency.
Dad Terry, from Frome, Somerset, said: "You'd think if he's the only kid in the country with this sort of leukaemia then they'd want to use him as a bit of a guinea pig.
“It was quite emotional over the weekend after we were told, it's absolutely ludicrous when they are playing with someone's life like this – how can they do that?"
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Mum Sam added: “Our consultants have appealed, they can't believe it either. It's the pen-pushers at the top of the NHS that have said no to funding Daryl's second transplant. So they are saying my son has to die. But we will fight hard to find the money.”
Family and friends have rallied around and pledged to help raise the £70-80,000 private cost of the treatment via a crowd funding website.
Daryl underwent a bone marrow transplant last July, with marrow donated from his big brother Bradley, 22, but the family were in despair when that failed in April, nine months later.
Five weeks ago doctors at Bristol Children’s Hospital told Sam and Terry that Daryl would need a second, bigger, bone marrow transplant and more aggressive chemotherapy.
But on Friday the family were told the NHS authorities would not fund it.
Darryl was a promising young footballer before his coach noticed he was getting breathless too easily.
Terry said: "They mentioned we should get him checked out, but he said he was ok. He started becoming one of those kids who, if you got a cold for a few days, his would last a few weeks.
“Then in March last year, he was really poorly and suddenly had all these bruises. Within a couple of days they'd diagnosed leukaemia."
Since his latest diagnosis, Daryl has been supported by charities trying to give him great experiences. The Chelsea-mad youngster met the team in training last month and attended his first game, and this week went to the Maclaren F1 garage.
But his family are desperate for help to raise the money needed for another transplant.
Terry said: "We can't wait to see if the appeal by his consultants works, it might be too late. Every day counts, and so we are really trying to fundraise."
A spokesman for NHS England said individual funding requests for treatments that are not routinely funded by the NHS are considered by experts and clinicians on a case-by-case basis.
It says applications need to demonstrate that the patient's circumstances and the treatment requested are "either exceptional or clinically critically urgent" and they are then reviewed to see whether they stand a chance of success.
The body said it had sent a letter to Daryl's lead clinician last week explaining why the application to fund the second transplant was being turned down but said a second application could still be made.
An NHS England spokesperson said: "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."
His aunt Stephanie Townend has set up a page on , while friend Alesha Bowen set up a page.
You can visit them by clicking on the links above.
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