Nuneaton mum calls for NHS stem cell rethink

http://www.bbc.co.uk/news/uk-england-coventry-warwickshire-37445074

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A mother whose children both had stem cell transplants has called for a rethink over the ending of NHS funding for treating relapsed patients.

Five-year-old Charlie Couper and his sister Zoe, three, had transplants to treat the same rare genetic disorder.

But while Charlie's treatment was a success, his sister may need a second operation after her condition returned.

Minou Couper said: "I'm incredibly worried treatment that could save my daughter's life may not be available."

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It was announced in July the NHS would no longer fund stem cell transplants for those patients whose initial treatment had not been successful.

A campaign has been launched to reverse the decision, with thousands signing a petition calling for a U-turn.

Mrs Couper and her husband Jeremy, from Nuneaton, Warwickshire, discovered Charlie had the condition familial monosomy 7 when he had a routine blood test aged two.

The condition results in bone marrow failure, as well as leading to acute myeloid leukaemia. Only stem cell treatment will save the life of sufferers.

It is so rare there are only 15 confirmed cases in the world, said Mrs Couper, 31.

The boy underwent treatment in 2013 after a stem cell match was found and, after many months, made a full recovery.

However, when their second child Zoe was just a few months old, they discovered she had the same condition.

"Geneticists are studying why it's happened to us. It's so rare it's like a needle in a haystack," said Mrs Couper.

Zoe had a transplant aged one, but despite initial hopes the operation had worked, tests in September 2015 showed the condition was still present.

Medics are now deciding if she requires a second transplant, but Mrs Couper fears the NHS will not fund it.

"Even if [doctors] are confident, it has to go to the NHS for a decision to be made.

"It's very worrying that they have the power to say no," she said.

Despite their difficult start in life, Mrs Couper says people would "never know" her children have been seriously ill.

"Zoe is happy, excitable and adventurous and thoroughly enjoys pre-school," she said.

"Charlie is absolutely fine - you'd never think that two years ago he was bald from chemotherapy and unable to walk.

On their transplant anniversaries, Mrs Couper said the children buy a box of chocolates and give it to a stranger with a card explaining they were given the gift of life.

"It's our way of giving back," she said.

Mrs Couper said she hoped by highlighting her family's story, more people would join the stem cell register.

She also hopes it will encourage the government to review its decision regarding funding for a second round of treatment.

"We hope by people joining the campaign we will get the NHS to do a U-turn," she said.

An NHS England spokesperson said: "We have every sympathy for patients in these extremely difficult circumstances.

"These tough funding decisions are made carefully through a rigorous and transparent process involving clinicians, experts and patient representatives, which the majority of respondents to a recent public consultation supported."