Family uncovers hereditary disease leading to deadly brain tumours

Father-of-three Wayne Chessum, from Billingborough, near Sleaford, was diagnosed with a haemangioblastoma in 2008, requiring emergency surgery to remove the mass, followed by Gamma Knife radiotherapy in 2010 to target the remaining abnormal tissues with focused beams of radiation.

In 2020, a second tumour was discovered leading Wayne to return to Royal Hallamshire Hospital in Sheffield for further treatment. There, doctors made a discovery that changed the Chessum family’s lives forever.

Wayne’s wife Debbie said: "Following Wayne’s radiotherapy, he received a letter informing him that several tumours had been treated and that he had Von Hippel Lindau (VHL) disease. We were shocked to learn this as it is a rare hereditary condition that causes tumours to grow in multiple organs, not just the brain. We had all three of our children tested, and devastatingly, they were all confirmed to have it too.

"Later, scans revealed that our sons, Harvey and Ashley, had developed brain tumours as well. Thankfully, our daughter Hollie does not have a brain tumour, but she does have VHL The boys underwent Gamma Knife radiosurgery, and Ashley also had surgery to remove a brain tumour. So far their prognosis looks positive.

“We are incredibly grateful that we found out in time before their tumours grew any larger, but we are concerned for what the future will bring to the children.”

According to the Brain Tumour Research charity, around 12,000 people are diagnosed with a primary brain tumour each year, yet just one per cent of the national spend on cancer research has been allocated to brain tumours since records began in 2002.

Now, Wayne, 56, Harvey, 35, Ashley, 30, and Hollie 22, remain under regular monitoring, with scans every 6-12 months looking for any new masses or growth. To channel their devastation into action, the Chessum family has raised over £113,000 for charities close to their hearts since 2008. From marathons to community fairs and even a Santa’s sleigh rally, their fundraising efforts have been relentless.

This March, for Brain Tumour Awareness Month and Wear A Hat Day, Debbie is running 5-10km daily in 40 different hats to raise funds and awareness of Brain Tumour Research. These range from a giant octopus to a sentimental granddad’s cap, each symbolising resilience. The campaign has already raised £1,600, with locals donating hats and funds in support.

Debbie added: “We are determined to do everything we can to support research into brain tumours as it’s the only way to find a cure. Discovering VHL has completely changed our lives, but instead of letting it define us, we are fighting back. We need more funding, better research, and greater awareness of this disease so other families don’t have to experience the same heartbreak. We also want to thank the amazing neurosurgeons of the NHS, which often only receives negative press, but has quite literally saved the lives of our family.”

Ashley McWilliams, Community Development Manager at Brain Tumour Research, said: “The Chessum family’s story highlights the urgent need for more investment in brain tumour research. Their fundraising efforts are remarkable, and we are incredibly grateful for their continued support. Despite brain tumours killing more children and adults under 40 than any other cancer, they receive just 1% of the national spend on cancer research. This must change.”

To learn more and donate to Brain Tumour Research, visit: https://braintumourresearch.org/