In Hope

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

Connie Campbell

Keen dancer Connie Campbell was diagnosed with a grade 4 medulloblastoma in September 2022 following a sudden bout of headaches and sickness. The 11-year-old, from South Woodford, East London, underwent surgery and is now on a phase 3 clinical trial for high-risk medulloblastoma patients. She has had induction chemotherapy, 30 sessions of radiotherapy and will soon be starting a six-month course of maintenance chemo.

Giles Rodriguez

At the age of nine Giles, who lives in Gibraltar, was diagnosed with a diffuse astrocytoma after experiencing severe headaches and double vision. Existing medical conditions meant that treatment options for Giles, who is now 15, were restricted. His parents, Lynette and Ruben sought a second and third opinion to give their son the best chance of a future. Eventually he had an operation to remove the three tiny lesions on his brain. The teenager is now monitored with MRI scans to check for any re-growth.

Sally Grainger

It was 2006 and Sally was 40 when she first noticed something could be wrong. It was thought the mum-of-two from Stourbridge in the West Midlands could have an eating disorder after dramatic weight loss. When she began to experience sickness a few months later, a gastroenterologist referred her for a CT scan and what she thought could be a problem with her stomach, turned out to be a tumour on her brain. Sally had surgery to remove a grade 1 astrocytoma in February 2007 and is monitored with an MRI scan every two years. Since her diagnosis, Sally, now 57, is a key figure in the brain tumour community finding a love of cycling which she has used to fundraise for Brain Tumour Research.

Aaron Wharton

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.

Abi Smith

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.

Abrica Bennett

Abrica Bennett, from Gravesend in Kent, was 13 when she was diagnosed with a grade 4 medulloblastoma in October 2004. She underwent surgery two days later and was placed in an induced coma, after which she had to learn to walk and talk again. She had seven weeks of radiotherapy followed by 12 months of chemotherapy and, after years of clear scans, was fully discharged in 2012. Now working as a customs broker, Abrica has been through the heartache of her mum’s diagnosis with an aggressive form of the disease. Jaqueline Blowers was diagnosed with an inoperable glioblastoma (GBM) in November 2022. She had combined radiotherapy and chemo throughout December and will soon be starting a six-month course of chemo.

Adam Carroll

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.”

Adam Dilley

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.

Alan Purvis

Up 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 Williams

My 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

Albie Turbitt

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.

Alex Mussard

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.

Alexander Josephs

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.

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