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
Former BBC correspondent and chair of BBC Children in Need, Rosie Millard, first realised something was wrong at the beginning of 2018, when she developed tinnitus in one of her ears. Doctors initially thought the ringing sound she was hearing was caused by a build-up of ear wax. Unsatisfied with the diagnosis, Rosie demanded an MRI scan, which revealed a large, low-grade tumour in her front lobe. As she is still coming to terms with her shock diagnosis and the surgery that followed, Rosie, a mother-of-four, is also feeling grateful that she has recovered well and is fighting fit – even going on to complete a marathon since her treatment finished.Read more
Eight-year-old Kyle Morrison was diagnosed with the least survivable of all childhood brain tumours six months ago. His devastated mum was given the nightmare news that he had a year to live. Now, half way through that “death sentence” she is desperately trying to raise the money needed for a clinical trial which she believes is their only hope.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 is currently nearing the end of a gruelling 18 months on chemotherapy.Read more
Katie’s diagnosis with a low-grade glioma had a huge impact on her emotional health. Located on her brainstem, the tumour is inoperable and incurable, and she lives with the knowledge that it could become aggressive and impact her daily functioning. Faced with such devastating news, Katie, 50, and her partner Kate decided to arrange a date for their dream wedding, having been together for more than four years. The couple will hold a raffle in aid of Brain Tumour Research on their big day – a charity which funds a research centre in Katie’s hometown of Plymouth.Read more
Katie had only been at nursery for a few short weeks when she was diagnosed with a brain tumour. Within hours she was undergoing emergency surgery but the tumour, although low-grade, is buried deep within her brain making it inoperable. She has endured 18 months of chemotherapy and three months of specialist radiotherapy in America which proved unsuccessful. Once again she is back on chemo and no-one knows what the future may bring.
“Life is so precious and, for us, fragile. We try not to look too far ahead and cling onto the fact that, with research, every day presents the possibility of better treatment options for Katie in the future. It is vital that we have hope and that we live in the moment but I do find it so incredibly hard to do. One of the biggest changes we have had to make since Katie’s diagnosis is to live with uncertainty, it is awful because nobody can tell us what the future holds.”Read more
Katie SmithSpecial needs teacher Katie Smith, 31, was struck down with debilitating headaches just weeks after returning from her honeymoon. After numerous visits to the doctor and hospital appointments, her symptoms were finally diagnosed as a brain tumour and Katie was given the agonising prognosis that she may not live to see her 40th birthday. Together with her mum who is battling Non-Hodgkin lymphoma, Katie has written a bucket list and has been able to cross off “publish a book” after winning a children’s writing competition launched by ITV’s Lorraine Kelly. Together with husband Luke, she is facing a dilemma over whether to go ahead with their plans to start a family.
“I feel we need something to live for but do I really want to bring a child into the world knowing that, potentially, it’s going to lose its mum at a young age? Or perhaps we should try to live our lives the way we would have done had we not known about the brain tumour. In order to protect the unborn child, you can’t have an MRI scan until you have passed the 12-week mark. The hormones of pregnancy could cause the tumour to grow and, if it came to it, would I choose myself over my baby? It is impossible to imagine, although I know what Luke would say. I had always imagined myself with three kids but now we will be lucky to have one. It is a very tough decision and one which we will make together.” Read more
Kelly Ann Alexander
Devoted to her husband and her horse, Kelly Ann was turned away from A&E when her brain tumour symptoms were dismissed as the effects of too much drink. Eventually diagnosed with a low-grade oligodendroglioma brain tumour, Kelly Ann went through surgery and had part of her skull replaced when a serious infection threatened her life. Two years later, the tumour was found to have regrown and Kelly Ann had radiotherapy and chemotherapy.Read more
Kelly LeeKelly was newly-wed and just 29 when she was diagnosed with a tumour on her pituitary gland. It was successfully removed during surgery but she estimates it took a full three years for her to recover completely. Kelly’s sister, Olympic swimmer Katy Sexton MBE, was among family and friends who helped Kelly through her illness. Katy is now organising fundraising events for Brain Tumour Research through her swimming academy.
“Being diagnosed with a brain tumour has changed my life for the better. It has strengthened my marriage, increased my confidence and motivated me to start my own business.” Read more
Kerri ParkerKerri Parker, from Dereham, Norwich runs The Kerri Parker Model Academy helping thousands of aspiring models start out or further their modelling careers. Kerri herself is an award-winning model and has competed in pageants around the world. She was diagnosed with two different types of brain tumour during the winter of 2013 just before her 30th birthday. Read more
When Wolverhampton dad-of-two Kevin Pemberton, 38, began suffering from sinus problems, he never imagined a brain tumour was the root of his symptoms. Having faced debulking surgery, radiotherapy and chemotherapy since his diagnosis in April 2019, Kevin is now back at work as a management accountant. While coming to terms with the fact his illness is incurable, Kevin is trying to keep life as normal as possible for his wife Michelle and their two daughters, 11-year-old Jasmine and Sofia, six.Read more
Kian JonesThe life of schoolboy Kian Jones was saved by his mother’s determination to pursue an accurate diagnosis of her son’s headaches and sickness. Trainee nurse Sabina’s relentless demands for a brain scan proved her instincts were correct. Kian’s condition was life threatening and he underwent emergency surgery. He is now settling back into “normal” life. Read more
Diagnosed with Asperger’s aged nine, Kieran was 12 when he was found to have five brain tumours which were aggressive medulloblastoma after failing to recover from a suspected winter sick bug. He underwent surgery which left him with posterior fossa syndrome and underwent physiotherapy and chemotherapy. Happily, a recent MRI scan revealed he was now cancer free. Kieran has shown amazing resilience throughout his terrible ordeal helped by his incredible sense of humour and his little dog Star.Read more
Just three weeks after starting her new job, Kirsty Barton, 28, was diagnosed with a brain tumour. The mum-of-two endured surgery in May 2019 which removed most of the tumour and now she is doing well. Kirsty’s diagnosis made her realise how precious life can be and she hopes that other patients will be inspired by her story.Read more