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
Carrie-Ann Greenwood, from Holywell in Flintshire, North Wales, was 36 weeks pregnant when a sudden loss of vision on her right side prompted her to visit her optician. She was referred for an MRI scan, which revealed a golf ball-sized tumour on her pituitary gland.
The diagnosis in May 2016 led to an emergency caesarean section to deliver her daughter Cerys, followed by brain surgery just days later.Read more
The eldest of three sisters, Amani Liaquat was diagnosed with an aggressive brain tumour after collapsing at home on her 22nd birthday in April 2020. The coronavirus lockdown meant she had to endure brain surgery and numerous scans with no visitors allowed at her bedside during a 12-day stay in hospital. After standard of care failed to stop the growth of her tumour the family were left in the difficult position of having to source lifesaving treatment from Germany. Thanks to the generosity of family, friends and complete strangers, over £100,000 was quickly raised to help finance this.Read more
Teenager Amber Hanna, from Belfast, suffered from migraines for as long as she could remember. After several years of going back and forth to the doctor to try find the cause, her brain tumour diagnosis eventually came in February 2020, when her tumour burst and she was rushed to hospital having suffered a serious haemorrhage. Amber, 17, went on to have brain surgery to remove the low-grade tumour and is now, finally, on the road to recovery.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
The first indication that anything was wrong was when James, a doctoral researcher and associate lecturer at the University of Plymouth, had a nocturnal seizure. It led to James, who had completed a tour in Afghanistan with the Territorial Army (Rifles), being diagnosed with a grade 3 anaplastic astrocytoma brain tumour aged 29, which developed into a glioblastoma multiforme (GBM) nearly five years later.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
Jay WheelerAlthough Jay's brain tumour was completely removed during surgery, he then had to undergo radiotherapy and chemo, leaving him with a number of different side effects. Despite his agonising ordeal he is looking forward to starting his degree course in Animation and Special Effects Read more
Labour Councillor and mum-of-three Jeanie Bell was diagnosed with two meningioma brain tumours at the age of 41. Her diagnosis came in November 2017, after years of suffering from a range of symptoms, including headaches, facial pins and needles and mood swings, which her doctors thought were peri-menopausal. Since discovering she had two, low-grade brain tumours, Jeanie set up a support group in her home town of St Helens in Merseyside, to help others on a similar journey. She is sharing her story to raise awareness of low-grade brain tumours and the profound impact they can have.Read more
Hard working wife and mum Jess Richardson was used to managing on her own while her husband worked overseas. He missed out on the birth of their daughter Isla-Rose, but was airlifted home when, out of the blue, Jess was diagnosed with a brain tumour. She took part in a clinical trial and then underwent Gamma Knife surgery, which to date has successfully shrunk the tumour by around two thirds. Jess believes Isla has been her saving grace because having her means that there is no other option than for Jess to be well. She will not leave her daughter without her mum; that’s non-negotiable.
“Now, with the great gift of hindsight, it’s hard to imagine how I could have been so calm about things. Darren was away, I had an eleven-month-old baby to look after but it never really crossed my mind that something might be seriously wrong. I had an MRI scan the first week in February and the call that changed our lives came the following day. You know where you think to yourself ‘knowing my luck I’ll find out I’ve got a brain tumour?’ Well, that’s what happened to me and it’s no joke. I was at home on my own late on a Friday afternoon when the consultant called to say they had found something on my brain and I needed to see my GP immediately. Darren was in Iraq and I sat with Isla on my knee as a doctor I had never met before told me I had a brain tumour. The doctor said he shouldn’t have been the one to tell me the news but, believe me, hearing the news has to be far worse than telling someone.”Read more