Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Recently published stories
Toddler Harry Crick, from Elmswell in Suffolk, was diagnosed with a rare brain tumour in December 2020, after he became unwell with a cold and was unsteady on his feet. His tumour is classified as grade 4, meaning that it is very aggressive, with a devastating prognosis of just 12 months. The inspiring two-year-old has undergone two brain surgeries and gruelling chemotherapy in an attempt to keep the tumour at bay. More recently, Harry and his family travelled to Essen in Germany, where the brave tot received proton beam therapy, to try to give him the best possible chance of survival.Read more
Digital product owner Nayfil Hussein, from West London, has suffered from bad headaches since her teens. The 32-year-old, who grew up in Luton, Bedfordshire, always thought they were related to her menstrual cycle. It was only after Nayfil became very unwell during a trip to Greece in 2019 that she knew something much more serious was wrong. Eventually, she was diagnosed with a medulloblastoma tumour, which has been treated with gruelling surgery, radiotherapy and chemotherapy. After experiencing punishing side effects from her treatment regime, Nayfil is finally feeling stronger and healthier and is now planning to do a charity walk to raise money for Brain Tumour Research.Read more
NHS clerk Zara Taylor, from Blackpool in Lancashire, was 30 when she was diagnosed with an aggressive, grade 4 brain tumour during the COVID-19 pandemic. Zara, who is married to Jordan, received her devastating diagnosis in January 2021, after she suffered seizures out of the blue. Prior to that, Zara hadn’t had any brain tumour symptoms. Zara is pursuing privately-funded chemotherapy alongside her standard of care NHS treatment. Determined not to focus too much on her stark prognosis, she continues to live life to the full and has committed to make a difference by setting up a Fundraising Group, to raise vital funds for Brain Tumour Research.Read more
Hilary Kingsley, 77, from Wimbledon, was diagnosed with a brain tumour in 2016 after experiencing symptoms which were initially put down to low blood pressure. She underwent surgery, followed by radiotherapy and now lives with the effects of her treatment. She is sharing her story of hope to show that there can be life after a brain tumour diagnosis.Read more
Professional dancer Holly Dooley began experiencing mild seizures whilst on a tour of Russia. Having recently got married and looking forward to starting a family, her world was thrown into turmoil as it became clear from an MRI scan, that the seizures were caused by a tumour on the front right temporal lobe of the brain. Having endured numerous operations and radiotherapy over the last four years, Holly remains determined to stay positive and enjoy her life.
“It was time for my career as a professional dancer to end. I have achieved some amazing things over the years but having to close the curtain on the job I loved was heart-breaking.”Read more
GP Huw McCandless was struck down with a seizure whilst driving his family to a local beauty spot for a Boxing Day walk. He underwent surgery to remove a glioblastoma multiforme (GBM) brain tumour and now, less than four months later, he’s planning to celebrate his 33rd birthday with a 5K run to mark the end of radiotherapy and chemotherapy. He is also keen to get back to his job helping patients.
Husband, father and grandfather Ian was 55 was when he was diagnosed with a low-grade brain tumour. He underwent surgery and was able to return to work but began to experience seizures, now controlled by medication, as the tumour grew back. No other treatments are available and further operation to de-bulk the tumour is seen as a last resort.
“Telling my children I had a brain tumour is, without doubt, the worst thing I have ever had to do. I can’t bear to see them upset and it makes me sorry to think that their lives are tinged with sadness because of me but, it is what it is; I am still here and determined to enjoy whatever time I may have with them. For a while the tumour was dormant and like a walnut in my brain but now it is growing once more. There are no other treatments other than a de-bulking operation which would be the last resort. In many ways I feel as if a breakthrough with a new drug is the only hope I have and that is why the research being funded by the charity Brain Tumour Research is so vitally important.”Read more
Iona Alford was just 22 when she was diagnosed with a brain tumour, but says that, despite the shock, in many ways it changed her life for the better. Following surgery to remove a rare ganglioglioma her prognosis is good and she is looking forward to a once-in-a-lifetime trip to Australia.
“After my diagnosis, I changed my job and booked a once-in-a- lifetime trip to Australia for six months. Although it’s a big step, I’m so excited to start this adventure and I know my illness inspired me to take that leap. For many people, travelling is about finding yourself but, for me, it’s about putting myself back together.”Read more
Jack Byam ShawIn May 1999, Sheila Hancock's grandson Jack was diagnosed with a brain tumour at just four years old. His mother, Melanie, was shocked at how long it took to diagnose him and at the nail-biting wait to determine the type of tumour and the treatment necessary. Reeling from the shock of diagnosis, they were delighted after several weeks of waiting to discover that they were one of the lucky ones - Jack's tumour was low- grade - and following five years of scans he is now scan free and living a normal healthy life. Read more
In August 2020, 58-year-old Jacquie Amor, from Kings Lynn in Norfolk, was diagnosed with three, inoperable secondary (metastatic) brain tumours. After a short period in hospital, Jacquie was too ill to return home and moved into a care home near her family in Leeds. Jacquie’s diagnosis came as a complete shock and has affected her both physically and mentally. She has been told she only has a few short months left to live.