The doting parents of a nurse battling leukemia for the fourth time have made an impassioned plea for help in their desperate race against time to raise £250,000 for treatment.
After relapsing once again in December 2018 following two stem cell transplants and chemotherapy, cancer-stricken Heather Bellamy, 48, has been told there are no further treatments available on the NHS.
After her first stem cell transplant, she joined an international Facebook support group for advice, and it was through this that she found out about Idhifa – a drug available in the USA but not yet licensed the UK – which targets patients with a gene mutation called IDH2 like her.
Determined to stay alive for her four children, who mean everything to her, Heather and her parents John, 72, and Angela, 70, are fighting tirelessly to get her the drug.
But, costing $25,000 (£19,349) a month, according to the NHS’ Specialist Pharmacy Service, the Bellamys need to raise £250,000 to get their daughter treated – and are praying the kindness of strangers will get them there.
Angela, a former teacher, said: “We’ve spoken to lots of people, from consultants to MPs about Idhifa, and the hope is that it will be available in the UK one day – but not in time for Heather. It’s very difficult knowing there is something in the world that can help, but feeling held back by red tape.”
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Mother-of-four Heather, of Downham Market, Norfolk, who has four children Lilly, 24, Alice, 22, Alfie, 16 and Sam, 14, was first diagnosed with acute myeloid leukemia, a cancer of the blood cells, in December 2014.
Years earlier, she had her thyroid removed, meaning she had annual blood tests to monitor her progress – one of which detected her cancer.
John, who has retired from the RAF, said: “A routine blood test in 2014 revealed she had leukemia. It was incredibly shocking. Angela and I hadn’t even heard her say she’d been feeling unwell. It was an awful lot to take in.”
He added: “We found out over the phone, as we were living in Spain. It’s one of those things you don’t ever think will happen to you.”
From there, Heather had three rounds of chemotherapy and went into remission.
But, less than a year later, as she prepared to return to work as a nurse, she relapsed in September 2015.
Angela recalled: “We thought we could move on and put this horrible thing behind us – but then it came back, and so the search began for a stem cell donor. Sadly, none of her family were a match.”
Heather’s search for a donor was successful, but the transplant itself was put on hold when she developed sepsis, when the body attacks itself in response to an infection.
Thankfully, she pulled through, and after more chemotherapy at Addenbrooke’s Hospital in Cambridge, had her first transplant in February 2016, using stem cells provided by an anonymous donor.
“It all seemed to go well, but by the summer of 2017 she had relapsed again, and doctors discovered that she also had the IDH2 gene mutation,” explained Angela. “After that, Heather had more chemotherapy before she ended up in intensive care when she had sepsis a second time.
“She was too ill to attend her daughter Alice’s graduation, which she was very upset about.”
A second stem cell transplant followed in October 2017 and, once again, Heather and her family felt optimistic for the future when it appeared to have worked.
Every month that passed with her still in remission allowed her hope to grow stronger. But then, in December 2018, she was dealt unbearable news for the fourth time.
“She’d been in remission for long enough to begin to hope, but then we got the news she had relapsed again,” said Angela.
“She tells us her strength comes from the love for her four children and to be there for them when they need her. It’s remarkable that she’s kept going.”
Currently having chemotherapy to help manage her symptoms rather than cure her, Heather, who has an “incredibly supportive” partner Max, 52, has been warned that there are no further treatments available on the NHS.
So, her family are determined to get her to the USA, where she will be able to receive Idhifa, which doctors there are able to prescribe.
In patients like Heather, the IDH2 mutation blocks young blood cells in the bone marrow from maturing into healthy adult cells – but, Idhifa works by releasing this block.
— HOPE4HEATHER (@hope4_heather) February 12, 2019
To fund transport, accommodation, hospital bills and the drug itself, though, the Bellamys are facing a mammoth target of over $300,000.
A GoFundMe page has already raised more than $26,000 in just a month and Angela and John are now praying kind strangers will keep helping them to keep their daughter alive.
“People have been incredible. We want to thank every single person who has helped out so far,” said John. “The community has rallied round, but the problem we have is getting Heather’s story out there on a wider scale. There must be somebody out there that can help us. All we want is to keep her alive.”
He continued: “We have been racking our brains to think of fundraising ideas outside the box. Somebody out there, whether it’s entrepreneurs, big companies or even football clubs may be able to help us.
“Heather was a nurse for 25 years before she became too sick to work, first in neonatal care then as a nurse advisor at NHS Direct. After that she became a community nurse then a lead practice nurse in respiratory care, helping people with asthma and the lung disease COPD lead better lives.
“Her career was so important to her, and she helped so many people – but now she is the one who needs help and I am praying everyone will help her.”
To donate, visit www.gofundme.com/auntie-heather039s-last-chance