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
Ten-year-old Jude Upton was diagnosed with a brain tumour, later identified as a grade 4 medulloblastoma, following a trip to Specsavers on his eighth birthday in March 2020. The youngster, from Milton Keynes in Buckinghamshire, had been suffering from a loss of balance, sickness, headaches, tiredness, a loss of appetite and changes in his personality. He underwent a craniotomy followed by chemotherapy, radiotherapy and further chemo, after which his tumour was stable. Sadly, in March this year, further growth was detected. He’s now completed two more cycles of chemo and is awaiting his next scan.Read more
In February 2021, Tom Claypole, 40, from Swanwick in Derbyshire, started suffering from constant headaches. Tom, dad to Shadean, 21, and Chardonnay, 17, went to his GP and his local hospital but they all said he had migraines. In August, one of Tom’s colleagues saw him black out while he was driving a van. Shortly after, he fell over and had a seizure. Tom’s fiancé took him straight to hospital where he had an MRI scan which revealed that Tom had a glioblastoma (GBM) brain tumour. Tom’s family has now embarked on a mammoth fundraising venture for Brain Tumour Research, aiming to raise £100,000 in three years.Read more
Twenty-two-year-old Olivia from Warwickshire had an isolated seizure in 2007, when she was just seven. After a medical check-up at Telford Hospital, she was discharged with no cause for concern. Nine years later, she began to have seizures during the night, waking up not knowing what had happened and these extended into the day. After biting the inside of her mouth during a seizure she was taken to hospital where a scan showed a mass on her brain. Due to the complexity of her tumour, Olivia’s diagnosis is thought to be a low-grade glioma or dysembryoplastic neuroepithelial tumour (DNET) after five years of clear scans, she remains on watch and wait.Read more
In April 2020, as the UK was coming to terms with a national lockdown caused by the COVID-19 pandemic, the lives of the Wharton family from Flintshire were turned upside down for a completely different reason. Their only child, four-year-old Aaron, was diagnosed with a rare, aggressive form of brain cancer. Brave Aaron has since undergone brain surgery, radiotherapy and has had a gastrostomy feeding tube fitted. His latest scan results were stable but Aaron’s parents know that their son’s future is uncertain and they’re determined to make the most of every day together as a family.Read more
Former public relations (PR) officer Abi Smith, from Stirchley in Birmingham, was used to a busy and fast-paced way of life before she was diagnosed with a high-grade glioma in June 2019. After a long-haul flight to America, Abi began to suffer from severe double vision, prompting her to seek medical help whilst overseas. With the results of a CT scan coming back as inconclusive, concerned Abi went to A&E on her return to the UK, and she was admitted to hospital for a month and was given the devastating news that, at just 24 years of age, she had a brain tumour. Since her diagnosis, Abi has retained a positive outlook and wants to share her story to inspire others living with their own diagnosis.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
Thirty-year-old Adam Dilley from Bedfordshire was just weeks away from becoming a dad when he and his partner Tasha were given the devastating news that he had an aggressive brain tumour. Adam’s shock diagnosis came after months of doctors misdiagnosing him with sinusitis, after he suffered symptoms including headaches, blurred vision and jaw pain. Adam underwent gruelling surgery to remove the tumour but was told it was very likely to grow back. Tasha is due to give birth to a baby boy next month.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
Little Albie Turbitt, just 16 months old, from Middleton St George in County Durham, never fully recovered from a bout of gastroenteritis in July 2021. He lost weight and, the usually active Albie, became more sedentary. In October, Albie went to hospital after being sick through the night. An emergency CT scan revealed he had a choroid plexus brain tumour. An operation to remove the tumour was a success, and Albie is back walking again.Read more
Alex Mussard thought the ongoing hearing loss he was experiencing in his right ear was probably caused by listening to music too loudly through his headphones. Three years after his symptoms first appeared and following several misdiagnoses, the 27-year-old was finally diagnosed with an acoustic neuroma brain tumour. Describing himself in his Twitter bio as an ‘acoustic neuroma warrior’, Alex is now seven months post-surgery, back to his full-time job in finance and counting his blessings after his life-changing experience.Read more
Seven-year-old Alexander’s brain tumour diagnosis and subsequent surgery and treatment were impacted by the COVID-19 pandemic. His devastated family now fear they have no other option than to crowdfund to help pay for a drugs trial and pioneering immunotherapy treatment in Germany which they believe is the only chance to save their beloved son’s life.Read more