Bereaved mums from Aylesbury Vale and Woburn Sands welcome new laboratory dedicated to treating deadly cancer

Shayen, who died of a GBM in September 2020, with mum Niki.

Bereaved mums who have lost children to brain tumours have welcomed a new research centre dedicated to finding a cure.

Sarah Long, from Winslow in Buckinghamshire, and Niki O’Dea Patel, from Woburn Sands – near Milton Keynes and Bedford – have both experienced the tragic loss of a child to brain cancer - the biggest cancer killer of children and adults under the age of 40.

They are among those welcoming the news that Milton Keynes-based charity Brain Tumour Research has awarded a £2.5 million grant to The Institute of Cancer Research (ICR) in Surrey where a team of scientists, led by Professor Chris Jones, will work towards new treatments for high-grade glioma brain tumours occurring in children and young adults.

Oscar Long, who died of a DIPG in November 2002, with mum Sarah.

The average survival rate for the vast majority of these tumours is just nine to 18 months.

Sarah’s six-year-old son Oscar died in 2002, two weeks after being diagnosed with a tumour known as a diffuse intrinsic pontine glioma (DIPG).

She said: “As a family, we are absolutely delighted that at long last high-grade gliomas, including DIPG tumours, will have a dedicated team researching treatments and cures for this most devastating disease.

“Brain tumour research is woefully underfunded and in this particular group, affecting mostly children and young adults, research has stood still in the 20 years since we lost our young son Oscar. This news couldn’t come quickly enough.

The ICR team led by Prof Chris Jones in the lab.

“We wholeheartedly welcome Professor Chris Jones and his team and very much look forward to hearing updates about their work and, hopefully, visiting the centre.”

Niki’s 13-year-old son Shayen died of a glioma brain tumour in 2020, less than two years after diagnosis.

She said: “As a parent told your child has a brain tumour, you assume in this day and age there will be something to increase the odds and give you hope. The harsh reality is with this type of tumour there are no such treatments.”

She added her family would continue to lobby for government investment to support charities like Brain Tumour Research.

Last month a report from the All-Party Parliamentary Group on Brain Tumours identified the current funding system for research into the disease was unfit for purpose.

It recommended funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours had remained unchanged for decades, leading to frustrated families seeking costly and unproven treatment abroad.

The charity aims to begin treatment trials within the next five years but says more government support is needed.

Brain tumours kill more children than leukaemia and any other cancer. Yet just one per cent of the national spend on cancer research has been allocated to this devastating disease.

Prof Jones said: “Our lab is working day in, day out to unravel the underlying biology of these dreadful tumours, and hopefully uncover new ways to attack them. This invaluable support from Brain Tumour Research will help to fuel new discoveries and pave the way to smarter, kinder treatments for children.”

Visit www.braintumourresearch.org to find out more about the charity behind the research centre.