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
Lily, from Eastwood near Southend in Essex, was just 13 when she was diagnosed with diffuse intrinsic pontine glioma (DIPG). Her family, which includes her parents Diane and Martin and her younger brother Josh, were told that the tumour was inoperable and the only treatment available was radiotherapy to give her a few extra months until the tumour began to grow again. They were told to go home and make memories. The Wythes have since found a promising clinical trial in the United States and are hoping to raise the hundreds of thousands needed to secure what could be life-saving treatment.Read more
Lyra was just five months old when she underwent emergency surgery to remove her tumour, a low-grade choroid plexus papilloma. Initially misdiagnosed as a virus, her symptoms had included a loss of appetite and vomiting. Now six, Lyra has released a cover of Christmas classic When A Child is Born, with funds being donated to the charity Brain Tumour Research.Read more
Laura was just 21 when she was diagnosed with a low-grade brain tumour. The swimming instructor and keen horse rider had suffered from debilitating symptoms for more than two years, including migraines, sickness, and psychosis, which were misdiagnosed as a mental illness. A year on from her diagnosis, she is still adjusting to life as a brain tumour patient. She’s at a crossroads as she decides whether to have further treatment. Her plans of moving into her own home and thinking about a family have been thrown into the air.Read more
Grace DalyA healthy 15-year-old, Grace found herself with the devastating diagnosis of a brain tumour after a short bout of headaches, dizziness and vomiting.
After undergoing surgery, chemotherapy and radiotherapy to eradicate her medulloblastoma, Grace has now been clear for seven years, and is a nurse, inspired by the amazing care she received during the battle with her tumour.
“It’s a totally devastating thing to lose your hair when you’re 15 when the way you look is so important.” Read more
Grace ThoburnGrace and her husband-to-be bonded over the scars on their skull – she had gone through brain tumour surgery and he had a bone-anchored hearing aid fitted. They are now expecting their second child and, as a patient representative on the Tessa Jowell Brain Cancer Mission, Grace is helping to shape the future for patients. Read more
Gruff CrowtherSchoolboy Gruff Crowther was diagnosed with a brain tumour after minor but repeated difficulties with his eyesight. At the age of seven, he was the youngest patient to attend a reception at Speaker’s House, Westminster, in March 2016 when he joined the charity Brain Tumour Research in calling for more funding for the devastating disease.
“We have been very open with Gruff right from the start, telling him right from day one that he has a tumour and that means a lump of badly behaved cells which are reproducing incorrectly. He is aware that there are different types of brain tumour and different types of cancer. While Gruff’s tumour is low-grade we mustn’t been fooled into thinking that means it is benign – we are aware that the rate of growth can accelerate and things can become problematic. Left untreated, Gruff’s tumour would definitely have caused more problems as it spread. So far, his scans have shown the tumour has reduced in size and, for now, things are looking positive.”
Harry MockettMusician Harry Mockett, 20, from Northampton, was diagnosed with a craniopharyngioma in May 2018, after suffering from vision problems. The tumour damaged Harry’s pituitary gland and he developed life-threatening complications from the surgery he needed to save his life. Thankfully, with the support of parents Sue and Ian, and sister Rosie, Harry is now doing well and is looking forward to releasing his debut EP ‘H.I.M.’ in June 2019. Read more
Harry St Ledger
Six-year-old Harry was diagnosed with a suspected diffuse intrinsic pontine glioma (DIPG) after what should have been a straightforward procedure to fit a grommet in his ear revealed a sinister growth in his brain. His tumour type has a shockingly poor prognosis and limited treatment is available. There is no option for Harry who will battle for his life dressed as Spider-Man, his favourite superhero.
“I am shocked to learn that brain tumours are the biggest cancer killer of children and adults under the age of 40, yet so many people still think it is leukaemia which is killing more of our precious children than any other form of this hideous disease. I am angry to think that Harry will have to live away from the security and comfort of his own home during treatment and I am frightened to think of what lies ahead.Read more
Heather TurnerHeather was 24 when she was diagnosed with an acoustic neuroma, a low-grade brain tumour which caused partial hearing loss. The only treatment option was surgery but complications caused nerve damage leading to life-long difficulties including facial palsy and the loss of sight in one eye.
“It took me ten years to recover from the damage caused by surgery to remove my brain tumour. There have been times when I’ve wondered if life was still worth living. Although I have lost count of the number of operations I have had to make me look ‘normal’, I now feel as if the worst thing that ever happened to me has changed my life for the better.” Read more
Professional dancer Holly Dooley began experiencing mild seizures whilst on a tour of Russia. Having recently got married and looking forward to starting a family, her world was thrown into turmoil as it became clear from an MRI scan, that the seizures were caused by a tumour on the front right temporal lobe of the brain. Having endured numerous operations and radiotherapy over the last four years, Holly remains determined to stay positive and enjoy her life.
“It was time for my career as a professional dancer to end. I have achieved some amazing things over the years but having to close the curtain on the job I loved was heart-breaking.”Read more
Husband, father and grandfather Ian was 55 was when he was diagnosed with a low-grade brain tumour. He underwent surgery and was able to return to work but began to experience seizures, now controlled by medication, as the tumour grew back. No other treatments are available and further operation to de-bulk the tumour is seen as a last resort.
“Telling my children I had a brain tumour is, without doubt, the worst thing I have ever had to do. I can’t bear to see them upset and it makes me sorry to think that their lives are tinged with sadness because of me but, it is what it is; I am still here and determined to enjoy whatever time I may have with them. For a while the tumour was dormant and like a walnut in my brain but now it is growing once more. There are no other treatments other than a de-bulking operation which would be the last resort. In many ways I feel as if a breakthrough with a new drug is the only hope I have and that is why the research being funded by the charity Brain Tumour Research is so vitally important.”Read more