Beau, six, was diagnosed with neuroblastoma aged four
Scientists are racing to end the heartache of families devastated by high-risk neuroblastoma which kills half those diagnosed.
The Daily Express today calls for Britain to fund vital research that could help more youngsters fight off the horrific disease.
Beau’s mum, Shirley Hepworth, said: “This could happen to anyone. You cannot do anything to 100 per cent prevent cancer and it doesn’t discriminate.
“Of course I want my daughter to have the best chance at life but this isn’t just about Beau. This campaign is about protecting future children.”
Together with charity Solving Kids’ Cancer UK (SKC), we are calling on the Government to Back Britain to Beat Childhood Cancer.
An estimated £10-15 million is needed for the UK to lead the European side of a transatlantic clinical trial of the vaccine.
Around 50 children a year are diagnosed with high-risk neuroblastoma in the UK and endure one of the most gruelling treatment regimes for any cancer.
They have only a 50/50 chance of survival, and one in five of those whose first round of treatment is successful later suffers a devastating relapse.
Beau was diagnosed aged four after experiencing stomach pains. Shirley, 41, said: “She had stage four high-risk neuroblastoma.
“It was in her bone marrow, throughout her skeletal system and she had a soft tissue tumour around her kidney.”
Beau started chemotherapy in early 2021 and had a 13-hour surgery. Growing around her organs and spine, the tumour was roughly the size of a rugby ball when removed.
During months in hospital she had stem cells harvested, then later returned to her body, and underwent further chemo and radiotherapy.
The effects were at times so debilitating that she could not speak and developed her own sign language.
When Beau went into remission in autumn 2021, Shirley had a decision to make.
An experimental vaccine has been developed which aims to slash the risk of the cancer returning by training the immune system to recognise and attack neuroblastoma cells.
However, it was only available through a study at Memorial Sloan Kettering Cancer Center (MSK) in New York.
British families are spending hundreds of thousands of pounds to travel there, creating more traumatic upheaval in their lives and a huge financial burden.
Beau and mum Shirley plan to travel to New York for treatment
Shirley felt torn over whether to put her daughter through the stress of multiple 3,000 mile treks to the US clinic.
She said: “Once in remission, Beau could just get back on with her life. It’s a really difficult decision to make and I know people who have decided not to do it.
“But I thought that if a year down the line she relapsed, I would never forgive myself for not doing this last little thing.”
Shirley launched an appeal on Christmas Eve 2021 to raise £317,000 – the estimated sum needed to cover several journeys to MSK.
She was astonished by the generous response of her community in Batley and Spen, West Yorkshire, and has raised £690,000. Leftover cash will go to other families or research.
Shirley’s MP, Kim Leadbeater, said she was reminded of the outpouring of support when her sister, Jo Cox MP, was murdered in 2016.
Kim, who is backing our campaign, said: “It took on a life of its own. I knew how powerful the local community had been after Jo was murdered.
“To see that develop with Beau and Shirley was incredibly inspirational and heartwarming. We were seeing the best of humanity.”
Beau’s cancer relapsed just 10 days before finishing frontline treatment
Beau was due to travel to MSK last April but in a cruel twist of fate she relapsed 10 days before finishing immunotherapy – the last stage of frontline treatment.
Shirley said this was why she never told her daughter that her treatment is over, or held a party to celebrate her being “cured”.
She added: “Beau is a living example of how the odds are stacked against these children.”
The youngster is now on an NHS trial which combines radiotherapy with antibody infusions. If the treatment is successful, the pair hope to go to New York before the summer.
Beau and Shirley will follow in the footsteps of at least 33 British families who have flown to join the US trial since 2016.
Although grateful for the opportunity to access the vaccine at MSK, they would suffer far less stress and disruption if they could get it here.
The Express is inviting Health Secretary Steve Barclay to meet with families including Beau and Shirley to understand how they could benefit.
Early studies found the vaccine triggered an immune response and patients with higher antibody levels appeared to have better survival rates.
However, more data is needed to conclusively prove whether it is effective and, if so, get it licensed and approved for NHS use.
Top neuroblastoma experts on both sides of the Atlantic are willing to work together to gather the wealth of data required.
Taking a leading role in the research would demonstrate this country’s strength as a science superpower.
It would also create a blueprint for further collaborative research into children’s cancers and rare diseases.
British patients would be among the first to access the jab if the UK helped establish a trial. And it would ensure our experts can collect the robust data required by regulators and the medicines watchdog.
Emily Hall, SKC’s research engagement and advocacy manager, said: “No family should feel they have run out of options as they try to do everything possible to save their child’s life.
“But this will remain the reality for too many until the UK government commits to dedicating investment to clinical research in children’s cancers, starting with this important trial.”
• To find out more about Beau’s journey, search for ‘Beau’s Fight Against Cancer’ on Facebook
Beau has stolen the hearts of thousands of people, not just here in Yorkshire but across the country.
She’s shown incredible strength and courage in the face of her illness. And somehow she always seems to manage a smile.
Beau’s been through so much in her short life so far, as have her family. The love and support of her mum Shirley, sister Redd, and granny June have kept her going. They are an inspirational family.
The local community has been exceptional and rallied round, holding events large and small to help raise the hundreds of thousands of pounds needed for Beau to go all the way to New York for vital vaccine treatment.
Everybody has been happy and proud to help, but it shouldn’t be necessary. If we can succeed in getting a UK-led trial up and running, families like Beau’s can be spared the huge amount of time and energy needed to fundraise on this scale.
And spared the added stress when already faced with a race against time to protect their kids.
Fortunately high risk neuroblastoma that Beau is so bravely battling is relatively rare. But government support to secure the funding and clinical support for a home grown vaccine trial will help the fight against all forms of childhood cancer.
The UK has some of the best scientists and medical experts in the world. They want to take up the challenge.
So my message to the PM and the Health Secretary is simple: do your bit and get behind the campaign so we can put a smile on the faces of many more brave children like Beau.
– Kim Leadbeater is the Labour MP for Batley and Spen, Shirley and Beau’s constituency
In the latest budget, Chancellor Jeremy Hunt expressed the need to invest in science and technology to boost the UK’s economy, wanting to create ‘the next Silicon Valley’.
It is incredibly important that in this mission, health research is not left behind.
Not only is this vital for patients in the UK, like children with neuroblastoma, who should have access to as many treatment options as possible through the NHS, but it will also serve to boost research infrastructure within our healthcare system.
In the last five years, families supported by Solving Kids’ Cancer have raised over £5 million to access treatment overseas.
This is to access trials that are not currently available in the UK, driven by the so-called ‘rarity’ of neuroblastoma.
But this rareness adds up – government investment in clinical trials for rare populations, such as the bivalent vaccine trial for high-risk neuroblastoma, will allow these astonishing sums of money to stay within our economy rather than being funnelled into foreign healthcare systems.
Cancer remains the leading cause of death in children aged one to 14 in the UK. While individual disease populations can seem small, the physical and emotional toll on those affected is immeasurable.
If the UK is to become a ‘science superpower’, it must use its power for good, and for every member of its society – including young children with cancer – we need to make sure their voices are heard.
– Emily Hall is research engagement and advocacy manager at Solving Kids’ Cancer UK