Fundraising in memory of Frome one-year-old helps fund new brain tumour research

A Frome family’s fundraising in memory of their ‘perfect’ baby girl has helped a leading childhood cancer charity fund vital new research into the type of brain tumour that she died from.   

Adeline Evans was just three-and-a-half months old when she was diagnosed with ependymoma in November 2020. Despite four brain surgeries and months of chemotherapy, Adeline died at home 18 months later, in May 2022.  

Katie Evans, Adeline’s mum, said, “Ependymoma brutally stole our daughter away from us.  

“Our beautiful Adeline was six years in the making. When she was born in July 2020 after our first cycle of IVF, we were so happy, beyond what words could ever describe.  

“She was a very happy, determined little girl. She was full of love and smiles. She loved to learn, watch TV, go on the swings and cause mischief.  

“It became very apparent whilst we were ‘on the front line’ battling this disease that research into ependymoma and its subtypes is massively underfunded. This means there is a distinct lack of treatments to target this type of tumour, especially when it strikes young children who can’t have radiation therapies.”  

Determined to make a difference to other families facing the same diagnosis in the future, Katie and her husband, Rob, set up Little Lady A as a Special Named Fund at Children’s Cancer and Leukaemia Group (CCLG) in November 2022 to raise funds for much-needed research into ependymoma.   

They’ve now been able to help fund a new project which will look at how to diagnose relapsed ependymoma sooner.   

Katie said, “We chose to set up Adeline’s Special Named Fund as we wanted to keep her memory alive.  

“We wanted people to continue saying her name. What better way to do that than to raise money to fund research that will help find a cure for this awful disease?  

“It is a proud moment to know that the fundraising done so far by us, and family and friends, has given researchers the opportunity to research ependymoma further.  

“Had there been a faster way to find out if a child had relapsed when our daughter was still with us, we might have had more time with our precious Little Lady A.”  

The new research project, titled ‘Detecting lingering brain cancer cells before a tumour grows back,’ is led by Dr Alison Whitby, part of Dr Madhumita Dandapani’s research group at the University of Nottingham.  

Dr Whitby and her team hope to identify molecules, called biomarkers, in fluid samples from around the brains of ependymoma patients. If she can find biomarkers that are only present when there are living ependymoma cells, she can use them to create a diagnostic test that can identify relapsed ependymoma sooner.   

If the research team can create a test that shows whether ependymoma has grown back after treatment, researchers could finally test whether earlier treatments improve survival.   

Dr Whitby explained, “I am working on a new method to monitor relapse in children’s ependymoma brain tumours. If we could detect relapses early and reliably, it would enable children to start another round of treatment faster. 

“I very much hope that I can generate a test that will be useful and invested in so that it becomes used in the NHS and further afield. I do this work because there is a possibility of it benefitting children with brain tumours.  

“I am humbled to be granted the funding from fundraising in memory of Adeline and hope I can help her memory live on by helping future children.”  

The ependymoma cancer samples needed for this project have been provided by the VIVO Biobank, as part of a new collaboration with CCLG. The biobank, co-funded by Cancer Research UK and Blood Cancer UK, stores the majority of children’s and young people’s cancer samples in the UK and the new partnership bypasses the need for researchers to collect cancer samples, allowing them to dedicate more time and funding to carrying out meaningful research.    

“I could not develop a test for ependymoma relapses if I did not have access to these ependymoma samples,” says Dr Whitby. 

“It is very important that hospitals bank patient samples of all cancers and make them available via the VIVO Biobank. They assess all applications to use samples in research to ensure they are used for the most benefit.”  

Sarah Evans, CCLG research manager, said, “We truly are in awe of our Special Named Fund families who, at very difficult times in their lives, choose to dedicate themselves to making a difference.   

“With Little Lady A’s support, we are delighted to have funded Dr Whitby’s work through the VIVO Biobank Pilot Grant scheme.  

“By funding projects like this, our Special Named Funds lay the foundations for future research. Pilot grants are crucial for kickstarting innovative research ideas, which can lead to larger studies and make a huge difference to children with cancer.”