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

Jude Upton

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.

Tom Claypole

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.

Olivia Keegan

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.

Iona Alford

Iona Alford was just 22 when she was diagnosed with a brain tumour, but says that, despite the shock, in many ways it changed her life for the better. Following surgery to remove a rare ganglioglioma her prognosis is good and she is looking forward to a once-in-a-lifetime trip to Australia.

“After my diagnosis, I changed my job and booked a once-in-a- lifetime trip to Australia for six months. Although it’s a big step, I’m so excited to start this adventure and I know my illness inspired me to take that leap. For many people, travelling is about finding yourself but, for me, it’s about putting myself back together.”

Jack Brydon

In 2003 and aged 17 Jack Brydon discovered he had a brain tumour. Today he is fit and well and leading a normal life. He counts himself as one of the few lucky ones. Read more

Jack Byam Shaw

In May 1999, Sheila Hancock's grandson Jack was diagnosed with a brain tumour at just four years old. His mother, Melanie, was shocked at how long it took to diagnose him and at the nail-biting wait to determine the type of tumour and the treatment necessary. Reeling from the shock of diagnosis, they were delighted after several weeks of waiting to discover that they were one of the lucky ones - Jack's tumour was low- grade - and following five years of scans he is now scan free and living a normal healthy life. Read more

Jacob Coldman

Jacob, from Winkleigh in Devon, was 12 when he was diagnosed with a low-grade optic pathway glioma after a routine eye-test in August 2018. He has been through two brain surgeries and gruelling chemotherapy and his tumour is now deemed inoperable as its location means he would almost certainly be left blind. Jacob is now 15 and, alongside regular scans to monitor the mass on his brain, he is receiving hormone treatment which he will probably be on until his mid-twenties and possibly, the rest of his life. His mum, Elaine, is sharing Jacob’s story to help others who may be navigating their own diagnosis.

Jacquie Amor

In August 2020, 58-year-old Jacquie Amor, from Kings Lynn in Norfolk, was diagnosed with three, inoperable secondary (metastatic) brain tumours. After a short period in hospital, Jacquie was too ill to return home and moved into a care home near her family in Leeds. Jacquie’s diagnosis came as a complete shock and has affected her both physically and mentally. She has been told she only has a few short months left to live.

Jade Cook

Just nine months after giving birth to her first child, 32-year-old Jade, from Yapton, West Sussex, was diagnosed with a brain tumour. A ward clerk at St Richard’s Hospital, Chichester, Jade had experienced a loss of sensation in her leg before her diagnosis in August 2019. Now, having undergone surgery, radiotherapy and chemotherapy, she is adjusting to a new normal with her husband Tom and their baby Rowan. Read more

James Crossley

Life was turned upside down in August 2000 when James, aged nine, was diagnosed with a brain tumour and underwent two huge operations. After the last operation he was left with weakness down his right side, severe speech problems, as well as educational and visual difficulties. Today, James’ story is one of hope as he overcomes his disabilities and looks to a more independent future. Read more

James Hinnigan

James Hinnigan was enjoying life with his partner and their son in Australia when he was diagnosed with a low-grade glioma brain tumour. The family moved back to Greater Manchester just before Christmas 2015 to be near friends and family as they faced the uncertain journey ahead. In the months that followed, James underwent pioneering surgery and mobilised thousands of people to sign an e-petition calling for more funding for research. He’s faced many challenges along the way but now, in 2018, life is on the up again for him and his family.

“On the whole though, I am positive and try to remember that there is someone, somewhere, who is worse off than me. This is the hand I have been dealt and I have to get on and play the game.”

James Hudd

James is a 39-year-old self-employed television sound engineer, who grew up and lives in south east London, where he counts himself lucky to be surrounded by lots of close family and friends. Previously a busy professional, with a hectic social life that came with his career in TV, everything changed for James in September 2018, when he was diagnosed with a brain tumour. Operations, radiotherapy and chemotherapy followed, and nights out to the pub during work trips away have since diminished. In November 2019, approaching the end of his planned 12 cycles of chemotherapy, James started writing a retrospective blog, to document his brain tumour story so far. He hopes by publishing his experiences he will help inform, entertain and inspire others who have received a similar diagnosis.

James Wardle

University student James was diagnosed with a low-grade brain tumour after he started to have nocturnal seizures. He has managed to continue his studies in mechanical engineering and will run the London Marathon 2018 for Brain Tumour Research.

“The London Marathon has always been number one on my bucket list and as there is no better time than now I am going to be taking part this year. I will be running for the charity Brain Tumour Research. For obvious reasons it is a charity very close to my heart and, as well as raising money, I hope to raise awareness of the startling statistics around this disease.”