The Ellie Mawdsley Foundation

Ellie’s symptoms first started in October 2021. She was studying for her accounting apprenticeship at the time. She mentioned that she had lost her confidence driving and felt she was on the wrong side of the road. Then, she went to a football match with her boyfriend, Jack, and talked about feeling dizzy as she climbed the steep stairs at the ground. Some symptoms – like struggling to remember things while studying – were put down to the pressure of exams. Doctors initially suspected vertigo and then a virus.

Karen says: “I had noticed that Ellie had started to slur her words and without her knowing, I had Googled her symptoms. My gut feeling was that she had a brain tumour.  When doctors dismissed her symptoms as a virus, I suggested she had her eyes tested, wondering whether perhaps there was an issue with her vision which could be causing all the problems. The optician said they could see something and suggested Ellie should go to her GP and request an MRI.”

An MRI scan revealed a brain tumour and within 48 hours of a biopsy, the diagnosis came through: DIPG. Her prognosis was 12 to 18 months. 

“Ellie was heartbroken. She had a wonderful life ahead of her and it was being swept away. We were determined to make memories and do everything we could for her. It was hard to believe the only treatment available was palliative radiotherapy.”

Her family raised money to pay for treatment from Germany. But unfortunately, the drug brought no noticeable improvement. Ellie and Jack got engaged and set a date for their wedding: 27 April 2023. But in January 2023, Ellie took a downturn. The local hospice offered her palliative care at home. Her family never left her side and Ellie passed away surrounded by them on 17 July 2023. 

After her passing, Ellie’s brain tissue was donated to Professor Chris Jones’ lab here at the ICR for research into brain cancer affecting children and young adults, as was her wish. She was adamant that she wanted to make a difference and support research into this awful disease. Her family are incredibly proud of Ellie for this. She always wanted to help others, so they set up The Ellie Mawdsley Foundation to continue her legacy.

 “As a parent, losing a child is unbelievably tough. I should not be having to set up a charity in my daughter’s name and I wish things were different and that this was not necessary. But I am so proud of Ellie, and carrying out her wishes has given me a purpose since her death. I try to live my life the way she would be living hers and she is in my thoughts with every decision I make. My wish is that no other family should go into a room and receive a diagnosis with no hope.”

The Ellie Mawdsley Foundation has generously pledged £57,500 to fund research in Professor Chris Jones’ lab. Ellie’s family want to be a part of the journey that leads to finding a cure.