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
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.
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.Read more
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.Read more
Ten-year-old Elsie Pyner, from Newport Pagnell in Milton Keynes, Buckinghamshire, was diagnosed with a grade 4 medulloblastoma in March 2015 at the age of two. She underwent emergency brain surgery followed by five months of intensive chemotherapy, a second resection, high-dose chemotherapy and a stem cell transplant. She now requires the use of hearing aids and has posterior fossa syndrome, selective mutism and a processing delay. In March 2020, a routine MRI discovered that she had a second unrelated tumour, a low-grade juvenile pilocytic astrocytoma (JPA). Initially thought to be a relapse of her first tumour, Elsie’s parents were told to prepare for life-prolonging rather than life-saving treatment. The youngster underwent two further surgeries and is now being monitored with six-monthly scans.
Emily Corrigan put her headaches down to her hectic life as the mother of four young children. She got on with raising her family and put up with the pain and fatigue for two years before being diagnosed with a low-grade diffuse astrocytoma which was successfully removed during surgery. Emily was told she had a 50/50 chance of the tumour returning. In fact she has had two reoccurences and has undergone further surgery, as well as radiotherapy and chemotherapy. Emily battles with fatigue and low energy, but tries to stay positive for the sake of her children.Read more
Emily JonesEmily, a PhD student at Oxford University, was studying for a master’s degree at Exeter College in 2011 when she started to feel unwell. It was a year later when she was finally diagnosed with a malignant ependymoma brain tumour, having taken matters into her own hands and financed a private consultation that she could ill afford. Her journey of diagnosis and treatment, which has included extensive radiotherapy, has demonstrated some disparities in approaches to treatments in the UK for her condition. Read more
Emma Crabtree, 49, from Skipton in North Yorkshire started getting headaches at work and had problems with her coordination in 2009. When she lost the feeling on her left-hand side a stroke was suspected, but doctors assured her that nothing was wrong. When Emma’s headaches intensified, her mum insisted that she be given an MRI scan. The scan revealed she had a grade 4 glioblastoma multiforme (GBM) brain tumour and she was given just 12-18 months to live. Twelve years on, Emma is defying the odds.Read more
Baby Esmai Wright-Stanford, from Stoke-on-Trent in Staffordshire, was just seven months old when she was diagnosed with an anaplastic ependymoma tumour. Her shock diagnosis finally came after several trips back and forth to A&E and feeling like she wasn’t being taken seriously. Now Esmai’s mum Chloe wants to share her daughter’s story to help campaign for better research into detecting and treating childhood brain cancer.Read more
The youngest of four children (big brother Jordan is 16, Lillie, eight, and Sienna, five) Esmé, now three, was diagnosed with a rare high-grade form of ependymoma whilst still just one year old. GPs had previously diagnosed a sickness bug or urinary tract infection. Esmé underwent major surgery and completed a gruelling 19 months of chemotherapy.Read more
Six-year-old Evie-Mai Smith was being investigated for possible dyspraxia as a result of constant bumps and falls when her brain tumour was discovered in March 2021. The youngster, from Lowestoft, Suffolk, was eventually diagnosed with a low-grade cystic pineal tumour and underwent brain surgery on 28 September, during which 95% of it was removed. She is now being monitored with regular scans but hospital visits aren’t easy as her experience has left her with such severe anxiety that she now has to be sedated before an MRI.Read more
Faith SpeakesAged 26, Faith Speakes’ life was on the way up. She was looking forward to marrying her fiancé Luke and starting a family soon after, but things were thrown off track when she was diagnosed with a brain tumour. Just weeks after walking down the aisle, Faith was in theatre to have a meningioma removed and a few months later she was found to have a second tumour. Despite it all, she is excited for what’s to come and feels her life has changed for the better. Read more
Two-year-old Finlay was finally diagnosed with a high-grade brain tumour after his mother repeatedly pestered health professionals saying she knew something was wrong with her son. He underwent surgery and is currently on chemotherapy. Finlay is doing well and his parents are trying to stay positive although they have been told that just 20% of patients survive beyond five years.
“I need to stay positive for Finlay, he is not a statistic, he is my son. Finlay is the most loving little boy and a true inspiration to us and everyone who meets him. He is our little soldier and continues to amaze us every day with his bravery and strength. It’s easy to sit back and think something like this won’t happen to you but it does, I am living proof of that, it has happened to our little boy. For this reason we all really do need to raise more funds and awareness to help fund the fight against brain tumours for all those amazing people, like Finlay, who are fighting. Hopefully, one day we will find a cure.”Read more
Flora had just started studying for A-levels when she began to experience strange feelings of nausea, hot flushes and partial seizures. She was finally diagnosed with a low-grade brain tumour in February 2016 and underwent surgery because of worsening epilepsy. Despite suffering from post-operative depression, she gained a university place to study chemical engineering. Now, two years since her surgery, she feels extremely lucky and is determined to change misconceptions about brain tumours amongst her peers.
“Looking back at my experience, I often realise how lucky I am. I’m fortunate that it all went well and I’m living more or less normally. The situation forced me to grow up and mature more quickly and I now understand the value of life. I can see how fragile and unpredictable it can be and I’m definitely more positive. Small issues that used to get to me don’t really matter now in the grand scheme of things.”Read more