Stop the devastation

Shay passed away in September 2020, 22 months after his diagnosis with a glioblastoma multiforme (GBM). His parents did their utmost to find alternative options for his clinical care, going to the United States, as well as Germany.

“We considered ourselves fortunate to be able to access help abroad and are acutely aware that there are so many families who are not able to do this. But the real issue here is that, in this day and age, when you are told your child has cancer you assume there will be something to increase the odds and give you hope. The harsh reality with this tumour is that there are no effective treatments. I can’t believe that funding for research into brain tumours continues to be so poor and that GBMs are still quoted as being rare when we have met so many patients, including children, through Shay’s journey, many of whom have since passed. GBM is certainly not rare and there will be no change and no hope without more funding for research. We cannot let another 10 years go by destroying families and taking more and more young children from their parents. We need the general public to take families like ours to their hearts, to get behind this and to make donations in order to help us to increase the national investment.”

Married to Sindhu, a GP, and working as a part-time recruitment consultant and musician, Sam was struck down with a seizure as he travelled on the Tube. He was diagnosed with a glioma brain tumour in February 2020 but its location and diffuse nature mean it is inoperable.

“My diagnosis came out of the blue and made me realise that my family is more important to me than anything. My life changed dramatically as, overnight, it meant I couldn’t work and couldn’t drive. The idea that I wouldn’t be here for Sindhu and the kids was unthinkable. We live from scan to scan and although no-one knows what lies ahead for me, I am choosing to be positive. It’s important to me that people hear my story and I hope that it will make a difference. Without more investment in research there will never be the improvements in treatment that we so badly need.”

Eddie was forging a career as a drag queen when he collapsed and was diagnosed with a high-grade anaplastic astrocytoma brain tumour in 2017. He underwent surgery and follow-up treatment. A life-threatening infection meant the removal of part of his skull. Eddie chose not to continue with chemotherapy.

“The treatment made me so ill and I can’t understand why in this age of modern medicine the treatment options available for people like me – cut it out, poison it, burn it – are so barbaric, more barbaric than the disease itself. I want to have the best quality of life for whatever time I have left. I have been offered reconstructive surgery, but the truth is, at the moment, I would rather live with a big dent in my skull than go through another operation. It’s certainly a talking point and if I can use it to raise awareness of how things are for patients like me that is a positive thing.”

Amani had graduated with a first-class degree in law and was looking forward to taking a Masters in social work when she collapsed with a seizure on her 22nd birthday in April 2020. She received the devastating news that she had been diagnosed with a grade 4 glioblastoma multiforme (GBM), carrying with it an average prognosis of 12 to 18 months. Faced with extremely limited treatment options in the UK, Amani and her family set about crowdfunding and, thanks to the generosity of family, friends and their community, quickly raised £100,000.

“The location and mutation of my tumour mean it’s inoperable and incurable. I am blessed that with the money raised I can purchase a trial drug from Germany which has shown promising results for some with the same mutation as me, H3K27. My life has fallen apart in the blink of an eye. It’s unfair and I am angry that so little investment has gone into this disease, particularly as it affects so many young people just like me who should have their whole lives ahead of them.”

David was initially diagnosed with a low-grade oligoastrocytoma brain tumour. He underwent gruelling chemotherapy and radiotherapy and also had immunotherapy in a bid to arrest the growth of the tumour which over time changed to a grade 4 glioblastoma. 

“David and I met at work, and we hit it off straight away. People said we were made for each other, and he was definitely my soul mate. We had so many plans for what we were going to do together. After his diagnosis we lived from scan to scan. When it was good news, we would go on holiday and then it got to a time when there were no more holidays. My heart is broken, I live from day to day and, were it not for the children, I don’t know what I would do. It’s lonely being a widow, not something I ever thought I would be in my 30s.”

“Like me, she had two young boys and our lives were intertwined as we went through so many shared experiences. Although there are lots of happy memories, it’s very painful to think what her life would have been like now and how much her family are missing out on having such a loving, fun and talented mother and wife and daughter here with them. This campaign represents a great opportunity for the general public to understand that, by getting involved and donating, they really can make a difference.”