“Our world came crashing down” ~ Lizzie’s story

Symptoms and diagnosis

In the weeks leading up to her diagnosis, Lizzie had double vision, a slight squint and was generally a bit wobbly on her feet.

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

The scan showed that Lizzie had a diffuse midline glioma, an inoperable brain tumour in her brainstem. Her family was 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 Bramall

Best treatment possible

Lizzie was referred to Addenbrooke’s Hospital in Cambridge. Here, her family was told about a clinical trial called BIOMEDE which was being part-funded by The Brain Tumour Charity.

The trial aimed to find new drugs to target diffuse midline gliomas. Lizzie was eligible and in addition to 30 sessions of radiotherapy, she also received a randomised oral drug in the hope of giving her the best treatment possible. But after a few months it became clear that the treatment was not stopping progression of Lizzie’s tumour.

Keep baking

Lizzie loved baking and tired to keep life as normal as possible despite losing the use of her left arm and using 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 help fund vital research. She even published a recipe book called “Keep Baking”.

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.”

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

Her legacy lives on in the work her family do. To date they have raised more than £500,000 to support research into this devastating disease.

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.