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
Phoebe Frances Brown
In 2018, actor Phoebe Frances Brown was diagnosed with an incurable tumour in the area of her brain that controls speech, language and memory. The 28-year-old from Nottinghamshire originally thought her symptoms, which included headaches and tiredness, were caused by a busy stint performing at the Edinburgh Fringe Festival. However, when her symptoms progressed, she was given an MRI scan, which revealed a large tumour on the left side of her brain. Despite going through surgery, radiotherapy and chemotherapy, Phoebe has continued to forge a successful career on the stage. She is about to star in her own one-woman show, which tells the story of finding herself in the bleakest of times and of discovering gladness in the saddest of moments.Read more
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
Daniel BurridgeDaniel is the youngest of three children with an older brother and sister. In his last year at Dr Challoner’s Grammar School in Amersham, Daniel is studying for A’ Levels in Further Maths, Physics and Geography, having already taken Maths last year. He is applying to university to study Mechanical Engineering and hopes to get a place at Imperial or Bath.
Aged 17, Daniel was just 5ft, 5in tall, despite his Dad being 6ft 4in. Investigations led to him being diagnosed with a tumour on his pituitary gland, which fortunately turned out to be benign.
“Mum found the six-week wait to learn whether the tumour was benign or malignant much more worrying than me. It really affected her, especially as, unbeknown to me, she went online and looked up pituitary gland tumours and discovered that in 20 per cent of cases they are malignant. I was more worried about whether I was going to be able to continue boxing, which I had enjoyed so much for the past five years.” Read more
Former professional footballer Danielle Gibbons, from Chorley in Lancashire, was 23 when she was diagnosed with a low-grade brain tumour, growing on the vestibulocochlear nerve, which helps to control hearing and balance. Just over a year later she was back on the pitch and, in November 2015, she received a Special Recognition Award at her club’s Player of the Year Awards. She’s no longer playing football for a living but 27-year-old Danielle is channelling her active and competitive nature into a fundraising challenge to raise awareness of brain tumours.Read more
Danielle Louise Gould
After experiencing months of painful headaches and issues with her balance, flight attendant, Danielle Louise Gould was diagnosed with a cerebellar hemangioblastoma brain tumour in 2012. Though her tumour was categorised as low-grade and not aggressive, Danielle still had to undergo 8 surgeries to remove the tumour and control the fluid build-up on her brain. With the support of her family, boyfriend and twin sister Cherise, Danielle rebuilt her life after the tumour and remains determined to continue working on her bucket list of goals with her sister before they turn 30 next year.
“I was taken to the John Radcliffe Hospital in Oxford, where an MRI scan revealed the nature of my tumour. It showed I had a tumour the size of a pea called a cerebellar hemangioblastoma in the centre of my brain, surrounded by a layer of fluid. This build-up of fluid, the size of an egg, was pushing on the cerebellum, which is the part of my brain that controls balance, movement and coordination.”Read more
Darcy was 21 months old when she was finally diagnosed with a brain tumour, but her mother had to fight to get medics to listen. She was still undergoing chemotherapy when her mother, Debbie was diagnosed with incurable cancer.
“Less than a year after Darcyana was diagnosed with a brain tumour, I found a lump in my breast…. I underwent a bone marrow biopsy which revealed that I had secondary breast cancer which had already spread to my bones. I didn’t think lightning could strike twice.”Read more
David has undergone surgery, radiotherapy and chemotherapy since being diagosed with a grade three anaplastic oligodendroglioma in July 2017. His tumour has caused a large social and economic burden as well as the psychological difficulties to not knowing what the future for him, his wife and their son, will bring.“It is difficult to convey just how much our lives have been changed by my diagnosis. I haven’t been given a prognosis as such, perhaps the doctors are scared to tell me. No-one knows how long I have had the tumour and, just now, I don’t know if I’ll be here for another four or five years or whether I’ve got as little as two months. It’s ironic to think that prior to my diagnosis I had stopped drinking, I’ve never smoked and have always been fit. It is hard to understand how this could happen to someone like me and not knowing what the future will bring is by far the hardest thing.” Read more
Mechanic Debs Clarke suffered years of crippling back pain prior to being diagnosed with a grade two hemangiopericytoma (HPC) brain tumour in February 2017 at the age of 43. Despite being house bound and coming to terms with maybe not returning to the job she loved, her strong faith has allowed her to remain positive and thankful for every day. Though her tumour is rare, she has been told there is a small chance her sisters could carry the genes, and is now focused on ensuring her sisters are tested for the disease.
“When a nurse looked at me funny after having my CT, I had a bad feeling about the results as she looked really worried. I called my best friend Mel panicking and said “I have a brain tumour”, to which she told me to stop being silly, as it was “likely to be nothing serious as brain tumours are really rare”. My suspicions were confirmed when the doctor called me the following Monday.”
Dixie had finally found his true soul-mate when he met Jules on the internet in 2005. They had 14 blissfully happy years together before Dixie was diagnosed with a glioblastoma multiforme brain tumour, grade 4 and given 12 to 18 months to live. Faced with a terminal illness, Dixie turned to poetry to express his deepest feelings and to leave a permanent reminder to his beloved wife, step-daughters and grandchildren.Read more
Edward was 29 when he suffered a seizure and was diagnosed with an anaplastic astrocytoma brain tumour. The tumour was high-grade and he was given a prognosis of just three to five years. He underwent surgery and treatment which left him with permanent hair loss and a misshapen skull. Four years on from his diagnosis, and together with his mum Julie, he is working with Brain Tumour Research to share his story and raise awareness of the disease which kills more children and adults under the age of 40 than any other cancer.Read more
When Elaine Lee-Tubby, 47, was diagnosed with a brain tumour, she was taken back to the dark days of losing her dad to the disease just three years before. Now, 20 months on from her own diagnosis, she is determined to prove that living with a low-grade meningioma doesn’t stop her from leading a happy life. Having married her childhood sweetheart Shawn last August, she’s looking forward to a relaxed Christmas with her husband and their four daughters, Emma, 31, Carla, 26, Symone, 22, and Leah, 13, and will soon take on a festive fundraising frenzy for the Brain Tumour Research charity.
“Shawn was my tower of strength. After 33 years of being together and having spent two years planning our wedding, nothing was going to stop us getting married; not even a brain tumour. The day itself was beautiful and everything I could have dreamed of. It was such a positive occasion in light of a negative couple of years. I didn’t think about my tumour at all.”Read more