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
Iona Alford was just 22 when she was diagnosed with a brain tumour, but says that, despite the shock, in many ways it changed her life for the better. Following surgery to remove a rare ganglioglioma her prognosis is good and she is looking forward to a once-in-a-lifetime trip to Australia.
“After my diagnosis, I changed my job and booked a once-in-a- lifetime trip to Australia for six months. Although it’s a big step, I’m so excited to start this adventure and I know my illness inspired me to take that leap. For many people, travelling is about finding yourself but, for me, it’s about putting myself back together.”Read more
Jack Byam ShawIn May 1999, Sheila Hancock's grandson Jack was diagnosed with a brain tumour at just four years old. His mother, Melanie, was shocked at how long it took to diagnose him and at the nail-biting wait to determine the type of tumour and the treatment necessary. Reeling from the shock of diagnosis, they were delighted after several weeks of waiting to discover that they were one of the lucky ones - Jack's tumour was low- grade - and following five years of scans he is now scan free and living a normal healthy life. Read more
James CrossleyLife was turned upside down in August 2000 when James, aged nine, was diagnosed with a brain tumour and underwent two huge operations. After the last operation he was left with weakness down his right side, severe speech problems, as well as educational and visual difficulties. Today, James’ story is one of hope as he overcomes his disabilities and looks to a more independent future. Read more
James Hinnigan was enjoying life with his partner and their son in Australia when he was diagnosed with a low-grade glioma brain tumour. The family moved back to Greater Manchester just before Christmas 2015 to be near friends and family as they faced the uncertain journey ahead. In the months that followed, James underwent pioneering surgery and mobilised thousands of people to sign an e-petition calling for more funding for research. He’s faced many challenges along the way but now, in 2018, life is on the up again for him and his family.
“On the whole though, I am positive and try to remember that there is someone, somewhere, who is worse off than me. This is the hand I have been dealt and I have to get on and play the game.”Read more
James is a 39-year-old self-employed television sound engineer, who grew up and lives in south east London, where he counts himself lucky to be surrounded by lots of close family and friends. Previously a busy professional, with a hectic social life that came with his career in TV, everything changed for James in September 2018, when he was diagnosed with a brain tumour. Operations, radiotherapy and chemotherapy followed, and nights out to the pub during work trips away have since diminished. In November 2019, approaching the end of his planned 12 cycles of chemotherapy, James started writing a retrospective blog, to document his brain tumour story so far. He hopes by publishing his experiences he will help inform, entertain and inspire others who have received a similar diagnosis.Read more
University student James was diagnosed with a low-grade brain tumour after he started to have nocturnal seizures. He has managed to continue his studies in mechanical engineering and will run the London Marathon 2018 for Brain Tumour Research.
“The London Marathon has always been number one on my bucket list and as there is no better time than now I am going to be taking part this year. I will be running for the charity Brain Tumour Research. For obvious reasons it is a charity very close to my heart and, as well as raising money, I hope to raise awareness of the startling statistics around this disease.”Read more
In October 2011, aged 25, Jay was diagnosed with a grade 4 glioblastoma multiforme brain tumour (GBM4). He was given a prognosis of six months. More than six years on, while still on three-monthly scans, Jay is a devoted husband to Becky and dedicated father to Teddy, born in January 2017. He has a job he enjoys, working part-time as a graphic designer.
“Two weeks later we were given the histology results. Jay had a grade 4 glioblastoma multiforme. We went home in an agonising whirl to do our own research. It was not good reading. I quickly realised that the best way to cope was to look for the positives. I voraciously read the stories of patients who had good outcomes and ignored the negative ones. Regrettably, these were far and few between.”Read more