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Together we will find a cure Donate

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

Rob Tillen

Professional DJ and keen rugby player, Rob Tillen, from Thornbury in South Gloucestershire, was diagnosed with a brain tumour in August 2021, after an optician sent him to A&E following a routine eye test. First suspected to have suffered a stroke, a CT scan revealed Rob had a mass in the left side of his brain and a biopsy later revealed it was a glioblastoma multiforme (GBM), meaning his prognosis is a stark 12 to 18 months. Following successful surgery to remove the tumour, Rob underwent radiotherapy and is currently on chemotherapy to try to delay the inevitable regrowth of his tumour. His fiancée, Annabel, who Rob is due to marry this summer, is fundraising to help pay for costly private treatment overseas, in a bid to extend his life.  

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Emma Crabtree

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.

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Linda Goode

Mother-of-three Linda Goode, an identical triplet from Lewes in East Sussex, started experiencing problems with her speech in October 2021. After several noticeable incidents in less than a week, she went to A&E where a CT scan revealed a mass on her brain. On her way home from a subsequent appointment, she suffered a seizure in the car and was given the anti-seizure medication Keppra. Over the next couple of weeks, she struggled to hold a conversation and developed a fear of talking after learning that doing so triggered her seizures, although increasing her medication helped. In November she underwent a biopsy and debulking surgery and in December she was formally diagnosed with a grade 4 glioblastoma multiforme (GBM). The freelance PE teacher and advisor will be starting radiotherapy and chemotherapy in the New Year.

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All stories

Emily Jones

Emily, 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

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.

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Esmé Lambert

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.

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Evie-Mai Smith

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.

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Faith Speakes

Aged 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

Finlay Niles

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.”

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Flora Bouchier

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.”

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Franco Pietrantonio

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.”

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Francoise Shelton

Francoise 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

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.

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