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
Jim started to experience symptoms after the UK went into lockdown during the coronavirus pandemic. He was staggered to be told that - like his wife 18 years previously, whom he has cared for ever since - he had a brain tumour. Despite the burden placed on the NHS as a result of Covid-19, Jim was diagnosed, underwent surgery and started treatment within weeks. He is sharing his story of optimism to bring hope to others.
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
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
Nine-year-old Eva Williams, from Wrexham, was diagnosed with a high-grade diffuse intrinsic pontine glioma (DIPG) in January 2020. The survival prognosis for this type of brain tumour – the deadliest type of childhood cancer – is eight to 12 months. She has undergone radiotherapy and her family has been told there is no further treatment available on the NHS. Desperate to help their daughter, Eva’s parents Paul and Carran are crowdfunding to raise the £250,000 needed for private treatment in the US.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
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