Liversedge mother's campaign after daughter's death from neuroblastoma

  • Report by Katie Oscroft

The mother of a six-year-old girl who died from a rare cancer says children are "paying the price" for gaps in research and treatment.

Shirley Hepworth, from Liversedge in West Yorkshire, lost her daughter Beau in June, three years after she was diagnosed with neuroblastoma.

She is now campaigning for improvements in care for affected children.

"We are absolutely heartbroken and devastated and will never recover from the sadness we feel about losing our beautiful Beau," she said.

"But if we do nothing then things will say the same 10, 20, 30 years from now."

Beau's family had to raise £300,000 in four months to give Beau the chance to take part in a new vaccine trial in America, but she was never well enough to make the journey.

Ms Hepworth said the UK should put resources into rare childhood cancers so that parents did not have to travel overseas when their child is already very ill.

"The UK is falling behind and our children are paying the price," she said.

Beau and Shirley travelled to Westminster to speak to ministers about their concerns.

In June 2022 Shirley Hepworth and Beau travelled to Westminster to ask the government to provide the potentially life-saving treatment in this country.

The family's MP, Labour's Kim Leadbeater who supported, them said:

"I will keep pushing for more research, I agree the UK is lagging behind in that regard so I will keep pressing in Westminster. Beau's legacy lives on."

Neuroblastoma affects around 100 children in the UK each year.

The charity Solving Kids Cancer is also campaigning for better access to therapies in the UK for children with rare cancers so that they do not have to consider travelling abroad.

The Department of Health said in a statement: "Brain cancer can be a devastating disease and our sympathies are with all those affected. We’ve specifically allocated £40 million for research in this area, on top of £1 billion a year for wider health research.

"We’ve invested in every suitable research application made and the funding will continue to be available for further studies to develop new treatments and therapies for brain tumours.“To encourage further successful applications, we are investing in infrastructure, workshops for researchers and training for clinicians."

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