“I try to live my life the way that Ellie would be living hers” – Karen’s story
Karen Mawdsley’s daughter, Ellie, was diagnosed with DIPG (diffuse intrinsic pontine glioma), an aggressive brain tumour, in December 2021. She sadly passed away in July 2023, aged 23. Ellie was determined to improve the lives of young people with brain cancer and selflessly donated her brain tissue to The Institute of Cancer Research. Her parents, Karen and Ian, are continuing her legacy and have set up The Ellie Mawdsley Foundation to raise awareness and fund further vital research into brain tumours in Ellie’s memory.
Ellie’s symptoms first started in October 2021. She was doing an apprenticeship at Grant Thornton, studying to become an accountant. One day, she mentioned to me that she had lost her confidence driving, she felt as if she was on the wrong side of the road. Then, she went to a football match with her boyfriend, Jack, and talked of feeling dizzy as she climbed the steep stairs at the ground. Initially, we brushed these things off. But then I started noticing that things weren’t quite right. I felt that Ellie was slurring her speech, although no one else really picked up on this.
Ellie continued to experience dizziness and went to the doctor who prescribed some medication for vertigo. This didn’t help. By now, she was also studying for her exams. She was stressed and felt that she was struggling to remember things. We put all this down to the pressure of exams.
In December, she was due to go to New York with Jack. By now, I was concerned about her continuing dizziness and I still felt she was slurring her words. I wanted her to be checked over before she went away. We were advised to take Ellie to A&E, but because Covid restrictions were still in place, she had to go in alone. She was unsteady on her feet and needed to hold on to me to get her in and out of the hospital.
Without Ellie knowing, I had Googled her symptoms, and my gut feeling was that she had a brain tumour.
The doctor brought Ellie back to me in the waiting room and told me that Ellie had some sort of virus. She would be fine to go to New York the next day. I remember saying to Ellie as we waited in the car park, “I’m so glad you’re fine, Ellie. I thought you had a brain tumour.”
She went off to New York as planned, but from the photos she sent us, I could tell something was off. She didn’t look her usual bubbly self. She looked utterly exhausted and I learned that she’d fallen asleep during a trip to the theatre. She felt dizzy around escalators and hated being near glass balustrades because she felt off balance.
I was convinced something was not right and when she returned home, I suggested that 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 that Ellie should go to her GP and request an MRI scan.
‘Ellie was given a prognosis of 12 to 18 months’
The next few weeks were a blur. Following her MRI scan at the end of December, we were told that a small tumour was present, but at this stage we were not given any more information. More detailed scans were needed before a diagnosis could be made. It was suggested that Ellie had a biopsy, and we were warned that it could take a few weeks for the results to come back. However, within 48 hours we were called and told to come in. It was then that the consultant told us the diagnosis: DIPG.
Ellie was given a prognosis of 12 to 18 months. I didn’t want to ask too many questions in front of her because I always wanted to protect her. She was heartbroken. She had a wonderful life ahead of her and it was all being swept away. We were shell-shocked and felt we were living in some kind of nightmare. It was hard to believe it was happening. We came home, determined to do everything we could for Ellie and to make memories.
It was hard to believe that the only treatment available for her was palliative radiotherapy. She started this in February 2022. Having started to research anything that was out there that might be of help to Ellie, I came across the name Professor Chris Jones. I got in touch with him, desperate to find out if Ellie was eligible for any drugs or clinical trials. But sadly, there was nothing. This was the beginning of our connection with the ICR.
Through my own research, I discovered a drug that was available privately in Germany, ONC201, but it would cost £5,000 a month. We hoped this would reduce Ellie’s tumour. Jack set up a fundraising page and we were overwhelmed by the support we received. It raised over £150,000 in 48 hours. It was incredible. Typical of Ellie, she suggested we ask people to stop giving, as we had more than enough to fund any treatment! She was overwhelmed by everyone’s kindness.
‘We wanted Ellie to be the one to survive’
She started ONC201 a few weeks after finishing her radiotherapy, but there was no noticeable improvement. We had no support whatsoever from Ellie’s oncologist who in fact made us feel we were doing the wrong thing by trying a drug not yet available in the UK. It was a very lonely journey for us. We shielded Ellie as much as we could. We were on a mission to beat this. We wanted Ellie to be the one to survive and we were prepared to fight this with everything.
Ellie faced other challenges too. In April 2022, she suffered a blood clot and ended up in hospital. It was horrifying to see that Ellie was given a DNR (Do Not Resuscitate Order). We fought this with everything – she was a 22-year-old girl on a mission to beat this. We were not prepared for people to give up on her.
It was such a lonely time for us, with no help or direction from any professionals, so we sought all kinds of alternative therapies, among them hyperbaric oxygen therapy and redlight therapy. We felt so vulnerable and just wanted to try anything that might work. Through Facebook, we connected with other families going through the same experience and shared ideas about therapies and treatments. We were determined to get the best possible help for our beautiful girl.
‘We focused on making memories’
We focused on making memories and went out as much as possible. We wanted to go abroad, but because of Ellie’s blood clot, we were afraid to risk flying and so we enjoyed long weekends away in the UK and managed a family holiday to Anglesey, one of Ellie’s favourite places. To be honest, it was frightening being away from home because we had been warned that Ellie might suddenly stop breathing at any time. Home became our safe space.
At this time, Ellie decided to use social media as a positive platform on which to document her daily routine including all her experiences, in the hope that they might help other patients. Ellie gained lots of support from her posts and it was great to see the boost that the positive feedback gave her.
Jack and Ellie got engaged and set a date for their wedding: 27 April 2023. Sadly, this was not to be, as towards the end of January 2023, Ellie took a downturn. Her mobility deteriorated and at that point, the local hospice got involved and they were amazing. Ellie had never wanted to be in hospital and I promised her that she would always be at home with us. She had palliative care at home, and she just kept fighting. We never left her side and Ellie passed away with us all around her on 17 July 2023. Her love for us and that sparkle in her eyes was there until the end.
At a young age, Ellie had spoken to me about wanting to carry a donor card. Shortly after her diagnosis, she mentioned to me that she wanted to donate her brain tissue to research. I did not want to ever think about her death and in a bid to protect her, I avoided conversations around this. However, towards the end of her life, her amazing palliative care consultant discussed all of it with us, and Ellie was adamant that she wanted to make a difference and support research into this awful disease. Her palliative care consultant facilitated the process and after Ellie passed away, her brain tissue was donated to Professor Chris Jones’ research into brain cancer affecting children and young adults. I am so incredibly proud of Ellie for doing this.
‘No family should receive a diagnosis with no hope’
When Ellie passed away, we had only used a fraction of the funds we’d raised for her treatment. We needed – and wanted – to continue what she had started. Ellie is and always will be our inspiration. We are determined to carry on and help fund vital brain tumour research. Ellie always wanted to help others and while her loss was still very raw, we decided to 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. This is why we have pledged to donate £57,500 to fund research into diffuse midline glioma (DIPG is a type of diffuse midline glioma) in Professor Chris Jones’ lab. There needs to be better treatment for this cancer, and we want to be on the journey that leads to finding a cure.
We are world leaders in the study of cancer in children, teenagers and young adults and have made huge strides over the past decade in improving treatment options for children with cancer.