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
Lily, from Eastwood near Southend in Essex, was just 13 when she was diagnosed with diffuse intrinsic pontine glioma (DIPG). Her family, which includes her parents Diane and Martin and her younger brother Josh, were told that the tumour was inoperable and the only treatment available was radiotherapy to give her a few extra months until the tumour began to grow again. They were told to go home and make memories. The Wythes have since found a promising clinical trial in the United States and are hoping to raise the hundreds of thousands needed to secure what could be life-saving treatment.Read more
Lyra was just five months old when she underwent emergency surgery to remove her tumour, a low-grade choroid plexus papilloma. Initially misdiagnosed as a virus, her symptoms had included a loss of appetite and vomiting. Now six, Lyra has released a cover of Christmas classic When A Child is Born, with funds being donated to the charity Brain Tumour Research.Read more
Laura was just 21 when she was diagnosed with a low-grade brain tumour. The swimming instructor and keen horse rider had suffered from debilitating symptoms for more than two years, including migraines, sickness, and psychosis, which were misdiagnosed as a mental illness. A year on from her diagnosis, she is still adjusting to life as a brain tumour patient. She’s at a crossroads as she decides whether to have further treatment. Her plans of moving into her own home and thinking about a family have been thrown into the air.Read more
London lad, Adam Carroll, was on a work trip to New York when his brain tumour first revealed itself. Aged 33 at the time, Adam collapsed and was rushed to hospital where he was told the devastating news that he had a high-grade tumour. The months that followed weren’t without their drawbacks but, 18 months on, he is now putting his time and energy into running and fundraising for research into the disease.
“I’ve been through a lot but I truly believe my diagnosis has made me a better person – I’m so much more appreciative of life and I just want to do whatever I can to help others with this disease. By fundraising for research into brain tumours, I know I’m doing something positive.”Read more
Alan PurvisUp until his brain tumour diagnosis, Alan Purvis, 50, held senior director positions in a number of large and medium-sized businesses. The successful businessman was also a keen cyclist, runner and mountain climber. The father-of-two from County Durham is still passionate about his hobbies and his profession but since receiving treatment for his tumour, he’s had to adapt his lifestyle and re-evaluate his career choices. Read more
Alan WilliamsMy husband Alan was diagnosed in 2007 with a brain tumour, following a seizure. It was just five years after his younger brother, James, passed away from the same devastating disease. Alan, 46, has been told that the tumour has now become very aggressive and, following recent further surgery at The Royal Victoria Hospital, Belfast, he is currently undergoing chemotherapy, under the care of The Cancer Centre in Belfast City Hospital.
“During our journey through this illness, Brainwaves NI has been our rock, offering advice and information when needed, as well as absolutely invaluable support from both the committee and members, all who have been affected in some way by this illness. The people behind this charity work tirelessly to raise funds for research into brain tumours which I believe will benefit so many people in the future who are affected by this terrible disease.” Read more
Alexandra DixonAlexandra Dixon was diagnosed with a low-grade oligodendroglioma brain tumour after suffering a series of severe epileptic seizures while on holiday in the south of France. Back in the UK, she underwent surgery in June 2007. An MRI scan in 2012 revealed the tumour had returned. She had surgery again followed by radio and chemotherapy. Read more
Since Ali was diagnosed with a brain tumour and epilepsy in April 2005, she has faced life with a smile despite the ups-and-downs of her illness. Having a great support network around her – in particular her dog Harry, who was able to sense the onset of her seizures – she has taken everything in her stride. Now she has participated in an indoor skydive to help fund research into the disease.
“The 13 years that have passed since my diagnosis have been full of ups-and-downs but I am determined to beat each challenge and keep living my life to the full. I’m in a battle with my tumour and choose to use positive mental attitude, good humour and determination to keep on smiling.”Read more
Talented artist Amanda Day had always been top of the class and was hardworking at school, but when her health began to deteriorate, she started to fall behind. After struggling for months to get to the root of her symptoms, Amanda was diagnosed with a small pilocytic astrocytoma in her brainstem. Now, she is left with irreversible and long-term effects of the radiation treatment she had four years ago. She is coming to terms with the fact she may never achieve her aspirations of going to university, owning a home and having a child.
“It frustrates me that most of my symptoms are due to the radiotherapy treatment I had four years ago, as opposed to the tumour itself. The treatment has left me with long-term symptoms, such as short-term memory loss and confusion, which will get worse over time. It has had a devastating impact on my education and daily life is a big struggle.”Read more
Amanda StevensFreelance training consultant Amanda Stevens, 42, was diagnosed with a grade 2 meningioma in June 2016, after suffering from persistent headaches. She married her partner of 24 years, Ian, nine months after her diagnosis and thought she’d seen the back of her illness when, in August 2018, her tumour recurred. Now, five months on from a gruelling 11-hour operation, Amanda is doing well and is keen to help raise awareness by holding a fundraising ball on Wear A Hat Day. Read more
Sales Manager Amy Drummond was just 13 years old when she began to experience small seizures and memory loss while studying for her GCSEs. After visiting numerous doctors in a bid to find out what was wrong with her, she was finally diagnosed with a rare type of brain tumour. Fortunately, Amy was able to have the tumour removed by surgery, but the tumour took its toll on her being able to enjoy teenage life too. Now, as she heads towards the milestone of turning 30, Amy is determind to not let her past affect her future.
“I have always been open with people about what I went through as a teenager and how it changed me as a person. Looking back, I missed out on school, socialising, dating, playing sport and even making friends. I would even say my brain tumour robbed me of my teenage years.”Read more
Determined mum Amy Quin will mark the first anniversary of her brain tumour diagnosis by skydiving 15,000ft from a plane with her sisters. The trio are raising money for the charity Brain Tumour Research. With a prognosis of five to seven years, Amy is hopeful that research will help to identify new treatments which would mean her tumour is operable giving her precious time with her family including partner Lewis and their four-year-old son Hector.
“In some ways my diagnosis has changed my life in a positive way - I now say yes to many more things, I want to embrace every opportunity I can and make the most of my time. This year, exactly 12 months since my diagnosis, I will be jumping 15,000ft out of an aeroplane with my two sisters. I did ask my consultant before I signed up and he gave me the thumbs up ‘as long as I wear a parachute.’ We’re raising money for Brain Tumour Research as, for me, this is my best chance. With quality research, maybe there will be a new treatment in a year’s time and my tumour will shrink and become operable.”Read more