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 August 2016, Wenna and Franco Pietrantonio were getting over a turbulent year. After the premature birth of their twin girls, who were in and out of hospital for their first year with various health complications, they faced another battle. In October, Franco was diagnosed with a large, presumed low-grade glioma after suffering a seizure in August. The father-of-three endured brain surgery to remove his tumour just a few days before Christmas which, thankfully, has since shown no re-growth. Now he requires yearly MRI scans and he and Wenna live with a new sense of vulnerability, knowing full well that life can turn upside down in an instant.
“Over the phone, the consultant said that Franco had a large tumour, presumed to be a low-grade glioma. To us, this was of little significance; we didn’t understand the diagnosis but instantly thought it would kill him. The diagnosis was a complete bombshell and it was awful. We tried to be strong and put on a brave face but personally, I felt very alone. Suddenly, I was on my own, looking after my family, and it was up to me to keep it together.”Read more
Francoise SheltonFrancoise was 47 when she was diagnosed with a brain tumour. She and her family had noticed some big personality changes prior to her falling unconscious. Francoise owes her recovery to the care and support she received from her children who were 20, 18 and 15 years old at the time. Read more
Freyja Hanstein was enveloped by grief after losing her husband to abdominal cancer just a month after they were married. Within a year she was fighting her own battle with the disease and underwent surgery to remove a brain tumour. She has now developed the app WholesomeWorld bringing together scientific and lifestyle information designed for patients and those supporting them through treatment.Read more
Single dad Gary Fordham, 43, was diagnosed with a golf ball-sized brain tumour after passing out at the wheel of his van on the M6 motorway. It happened on New Year’s Eve 2018, when he suffered a seizure on his way home to Bradford after visiting his parents in Swindon for Christmas. Gary was in the van with his dog, a ‘shug’ called Buster, and his 11-year-old son Hayden. All three miraculously survived. Since the near-fatal accident, Gary has gone on to have an awake craniotomy to remove the tumour. He is now waiting to have a titanium plate fitted to replace part of his skull, since he developed an infection following his brain surgery.Read more
Gary RobinsonFather-of-two Gary Robinson marked his 34th birthday in May 2015 by running the Manchester 10K to raise money for Brain Tumour Research. It was the first such event he had taken part in and it came just months after he underwent surgery and radiotherapy to remove an extremely rare and aggressive grade II haemangiopericytoma brain tumour. Read more
Gavin had recently become a father and had been married for just six weeks when he was diagnosed with cancer of the spine which had metastasised to his brain. His new wife and baby daughter had to move temporarily from Cornwall to Bristol to be with him as he underwent surgery and radiotherapy treatment.Read more
When 58-year-old Gaynor Farrington, from Liverpool, started suffering from cramps and pain in her neck and shoulders, she never suspected she had symptoms of a brain tumour. It was only after a terrifying seizure at work that she discovered she had a meningioma. Her tumour was low-grade and operable but following surgery, Gaynor contracted a bone flap infection and had to have part of her skull removed. She is now awaiting a further operation to replace the missing bone flap. In spite of her ordeal, Gaynor says she feels extremely lucky and has a new-found appreciation for life.Read more
Gemma GliddonMother-of-two Gemma Gliddon is awaiting surgery for a schwannoma brain tumour which has regrown after a previous operation. Determined to remain positive, Gemma, 32, is training to become a nurse and is helping to raise awareness and funds for research by taking part Wear A Hat Day 2015 just four days after her latest operation. Read more
For first-time parents Stephanie Day and James Devlin, it was devastating to be told their new-born baby George had a brain tumour. ‘Gorgeous George’ underwent a nine-hour craniotomy when he was just 10 weeks old and is now a healthy and happy little boy. His mum Stephanie, 27, who was shocked that someone so young could be diagnosed with such a serious condition, is keen to raise awareness of the disease.Read more