East Devon: Mum’s shock death from a brain tumour months after her wedding sparks a family’s heartfelt campaign for more funding for better treatment

The family of a newlywed mum from East Devon who died from brain cancer are campaigning for better treatment and funding in the hunt for a cure for the devastating disease.

Some three months after the wedding of her dreams, Michelle Noakes, aged 38, who grew up near Honiton, in East Devon, was in November 2019 diagnosed with an aggressive and inoperable brain stem glioma.

Her family is honouring her last wish – to share Michelle’s story and raise awareness of the Brain Tumour Research charity amid its work to fund better treatments and find a cure.

They recently met scientists who are working towards ways to cure the disease.

East Devon

Michelle and her husband Simon, with their children, on their wedding day.
Photo: with permission.

Michelle’s shock diagnosis came after suffering dizzy spells and a tingling sensation in her face and hands.

Her sister, Sam Williams, aged 39, from Taunton, in Somerset, said: “On the morning of her wedding to the love of her life, Simon, Michelle mentioned having a tingly feeling in her face a bit like pins and needles. I remember mum encouraging her not to worry about it and she advised her to see a GP once the wedding was over.

“Their wedding was such a happy occasion, full of love. We feel grateful that we didn’t know about Michelle’s brain tumour before then.”

Honiton

Michelle before her diagnosis.
Photo: with permission.

Despite NHS treatment, private consultations, alternative therapies, repurposed medication and lifestyle changes, Michelle’s condition deteriorated and eventually, she lost most of her vision, mobility, and speech.

Michelle, who was living in London, died in June 2021, shortly before her 40th birthday, and 19 months after her diagnosis, leaving behind her children Otto and Poppy who at the time were aged six and three-years-old.

Sam said: “Our whole family scoured the internet for medical trials or cutting-edge treatments that might offer just a glimmer of hope after countless dead ends. All of which came with a huge price tag.

“She managed one round of immunotherapy which cost tens of thousands of pounds that people donated to us so generously. Even if this just gave her a little more time with her family it was worth it.”

East Devon

Michelle Noakes, centre, with her brother Simon Williams and sister, Sam Williams.
Photo: with permission.

Since Michelle’s death, family members including her two siblings, Sam and Simon Williams, parents David and Julia Williams, and widower, Simon Noakes, have held an annual music festival near Culmstock in Devon. M-Fest raised more than £7,100 for the charity Brain Tumour Research.

In recognition of their fundraising the family were invited to tour the labs at Queen Mary University of London, led by principal investigator Professor Silvia Marino.

There, they spoke to scientists about their work to find a cure for the disease and placed two tiles on a Wall of Hope, representative of the £2,740 it costs to fund each day of research at one of the charity’s four centres of excellence.

Honiton

Michelle during treatment.
Photo: with permission.

Sam said: “It was really inspiring meeting the scientists, hearing how much progress has been made in recent years since the centre was started. It was bittersweet seeing Michelle’s tiles on the wall of hope but we were really pleased to see her remembered in this way alongside all the other people lost to brain tumours.”

She added: “As a family we feel that the treatment options the NHS have available are just not good enough. It’s absolutely essential that there is more funding for research into treatment for brain tumours, so that ultimately the NHS can do more to help people who face this stark diagnosis, and families do not find themselves having to desperately search for private or alternative treatments.

“Michelle was such a kind, thoughtful, hardworking and fun-natured person and she absolutely loved being a mum. One of her last requests was that we share her story to raise awareness. Typical of Michelle, she was thinking of others and hoping that her story might help prevent other children losing their mum too.”

East Devon

Michelle, left, in happier times with her sister, Samantha.
Photo: with permission.

Louise Aubrey, Brain Tumour Research spokeswoman, said: “We’re really grateful to Michelle’s family for their incredible support and generosity in her memory.

“We hope their visit to our centre of excellence at Queen Mary University of London offered a useful insight into all we’re doing to improve treatment options for patients and, ultimately, find a cure.”

She added: “Just 12 per cent of those diagnosed with a brain tumour survive beyond five years compared with an average of 54 per cent across all cancers, yet, just one per cent of the national spend on cancer research has been allocated to this devastating disease since records began in 2002. This has to change.”

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