“Our world came crashing down when Lizzie was diagnosed with a diffuse midline glioma”

In the weeks leading up to her high-grade glioma diagnosis, Lizzie experienced symptoms including double vision, a slight squint and generally being a bit wobbly on her feet.

Then on the eve of half term, when Lizzie, her mum Sally and dad Mark were due to go on holiday, Lizzie’s symptoms got worse. Her mum took her to the GP who sent them to A&E where Lizzie had an MRI scan.

Diffuse midline glioma

The scan showed that Lizzie had a diffuse midline glioma, an inoperable brain tumour in her brainstem. The family were told the devastating news that there were no effective treatments for this type of brain tumour.

It was a horrifying diagnosis. Diffuse midline gliomas are difficult to treat because of the way the spread in the brain, and with very limited treatment options, our world came crashing down.

Sally, Lizzie’s mum

Best treatment possible

Lizzie was referred to Addenbrooke’s Hospital in Cambridge. It was here that her and her family were told about the BIOMEDE clinical trial. Lizzie joined the trial to give her the best possible treatment. The Brain Tumour Charity partly funded this trial.

This trial aimed to find new drugs to target diffuse midline gliomas. In addition to 30 sessions of radiotherapy, Lizzie also received a randomised oral drug as part of the clinical trial. After a few months it became clear that the treatment was not stopping progression of Lizzie’s tumour.

Keep baking

Lizzie was full of life, her love for baking shone through even following her diagnosis. She fought hard to keep life normal despite losing the use of her left arm and needing a wheelchair. Throughout her treatment she went to school as much as she could. And Lizzie used her love for baking to raise money for the Charity to fund vital research. She even published a baking book called “Keep Baking” which contains lots of recipes.

Sally said: “Lizzie was part of a clinical trial, so from early on we understood the importance of research and the funding it needs. We continue to raise money for The Brain Tumour Charity in Lizzie’s memory and we are really passionate about the research The Charity funds.”

Just nine months after her diagnosis, a week before her 10th birthday, Lizzie died in her parents’ arms.

Her legacy lives on in the work her family do to raise money to support the research to find more treatments for this devastating disease.

To date they have raised over £500,000. And Lizzie’s baking recipes are being shared far and wide for The Brain Tumour Charity’s Big Bake which will take place in September.

Our paediatric high-grade glioma research

Find out about the research we are funding to bring better, kinder treatments for diffuse midline glioma – the type of tumour Lizzie had.