Parents robbed of seeing 'beautiful son' grow up call on government to increase brain tumour research funding
Brain tumours kill more children and adults under the age of 40 than any other cancer - but just 1% of the national spend on cancer research is allocated to brain cancer.
Wednesday 19 July 2023 04:31, UK
Parents who were "robbed of seeing our beautiful boy grow up" after he was struck down with brain cancer are calling on the government to increase funding for research into the disease.
Ben Williams was diagnosed with an inoperable glioblastoma (GBM) within weeks of turning five in March 2018.
Despite gruelling radiotherapy and chemotherapy treatment, Ben died 14 months later, in May 2019. He was six.
Brain tumours kill more children and adults under the age of 40 than any other cancer - but just 1% of the national spend on cancer research has been allocated to brain tumours.
And in the year their son should have turned 10, and to mark GBM Awareness Week, Ben's parents, Jo and Sam, shared his story to help drive awareness and funding towards research to eventually find a cure.
"We were stunned to hear the word 'dismal' used as the consultant explained the record of success for treatment of tumours like Ben's," the couple said.
"How was it possible that there wasn't an effective treatment for a cancer in someone so young and otherwise healthy?
"Ben was denied his future, a long life. We were robbed of the joy of seeing our beautiful boy grow up because of a disease that is, at the moment, ahead of the science. This must change."
Having lost his ability to speak, Ben remarkably began talking again five weeks into his initial treatment - offering what felt like a period of hope for his family.
Ben, from Birmingham, became the focus of global attention after a video of him being awarded a replica World Cup trophy by NHS staff - to recognise his bravery as he completed his course of radiotherapy - went viral online.
The video was shared by Ben's hero and England captain Harry Kane, who was later joined by the five-year-old on the pitch at Wembley to collect his golden boot after the 2018 tournament.
But in the days around Christmas 2018, the family were struck by the reality of brain cancer as symptoms returned and they were told the tumours had grown once again.
Jo said: "Conversations once full of hope changed into talks of finding a hospice for Ben. We searched for clinical trials, each one came with their own criteria. We even had our passports renewed in preparation to travel to America.
"Ben got on a local trial, however this had no effect on his cancer.
"Our kitchen transformed into a mini hospital as we had to mix the contents of his chemotherapy tablet with various puddings to try to make it easier for him.
"It felt awful, cruel and at times futile but we had no other choice given the lack of other treatment options available.
"With the pandemic we have seen what can be achieved when research is prioritised and properly funded.
"It is not acceptable that so little is spent on brain tumour research when it has the most devastating survival rates. It is time for some hope for those facing GBM, too many lives have already been lost to this horrifying disease, the stories are all too often tragically similar."
Jo and Sam, who are also parents to Lydia, seven, and three-year-old Reuben, are among the tens of thousands of people who have added their name to the petition to increase research funding, in the hope of prompting a parliamentary debate.
They are asking the government to ring-fence £110m of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
Brain Tumour Research says the increase in research investment would put brain tumours in line with the spend on cancers of breast, bowel and lung, as well as leukaemia.
Mel Tiley, community development manager at Brain Tumour Research, said: "For too long governments have put brain tumours on the 'too difficult to think about' pile. Five years after the government announced £40m for brain cancer research, less than £11m has been spent.
"Patients and families continue to be let down by a funding system that is built in silos and not fit for purpose."
A Department of Health and Social Care spokesperson told Sky News: "Brain cancer can be a devastating disease - which is why 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 application made and the funding will continue to be available for further studies to develop new treatments and therapies for brain tumours."
To sign and share the petition before it closes at the end of October 2023, go to