In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
Recently published stories
Victor Ortiz and Assunta Trapanese lost their only child to a deadly brain tumour in 2019. Isabella Ortiz was just three when she was diagnosed with DIPG at the Royal Manchester Children’s Hospital in June 2017 and died at the age of five. Her parents desperately sought private treatment and will remain forever grateful for the support of their community, who remain by their side through the darkest days, as Isabella succumbed to the disease and they said the cruellest of goodbyes.Read more
Helen worked with us in December 2015 to share her story here. Sadly, she passed away on 18th June 2019. We will remember Helen as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
New mum, Helen Legh, a BBC radio presenter, feared her baby daughter Matilda wouldn’t survive. Now five, Matilda is thriving, but Helen faces the grim reality that she won’t see her daughter grow up and is making the most of whatever time they have left together. She is also creating a treasure chest of precious mementoes for Matilda to cherish when she is gone.
“Even my worst fears hadn’t prepared me for this. I immediately thought of my Matilda, then just four years old, who had only recently started at school. How long was she going to have a Mummy? I was so sad to think how I was never going to see her grow up, or get married, how I was never going to be a Granny. And more to the point, how were she and her Daddy going to cope when I died?”
Paul and Helen never anticipated that their wonderful family life with their much-wanted daughter Matilda would come crashing down with Helen’s diagnosis with an aggressive brain tumour. In the four and a half years she survived with a glioblastoma multiforme, Helen underwent surgery four times as well as chemotherapy and radiotherapy treatment.Read more
Caroline CroninMarine biologist Caroline Cronin’s biggest wish after being diagnosed with a terminal brain tumour was to get back to work. There were two things she felt she still wanted to achieve – to get married and have a baby. She defied expectations to achieve both and the family were able to spend precious months at home together before Caroline passed away in October 2013 at the age of 32, leaving her husband Marcus and their six-month-old daughter Florence.
“The few times that Caroline allowed anyone to see her upset about her condition was when she worried about how her illness affected others. We both desperately wanted to be married and felt blessed to have a baby together. The grieving process takes a long time but knowing Caroline was able to do the two things she most wanted makes it a bit easier. We had been through so many very difficult times together and, when Caroline died, I was just grateful that it was as she had wished. I held her hand as she passed away at home. The first thing I did was to hold Florence and, in a way, it meant I didn’t feel as if I had lost Caroline completely as I had our baby.”
Caroline FosterCaroline was initially diagnosed as having depression (which was something she had suffered before) and then a breakdown. Her husband, Andy, first noticed something wrong after Christmas when Caroline just didn’t seem herself, wasn’t focusing on things and wasn’t caring for herself.
By the time Caroline became incontinent, she was assessed by health workers and was admitted to a psychiatric hospital, where she spent a week before having to leave as the hospital couldn’t provide the level of care she needed - by then she was unable to do anything for herself and even had to be moved with the use of hoists. There had been no improvement in Caroline’s condition, even with medication and therapy.
In August 2014, a CT scan revealed that Cat, aged 36 and the mother of Robert, 15, had a brain tumour. Following surgery and a biopsy, the devastating news came back that the tumour was in fact cancerous – suggestive of a metastatic spread, but, on a positive note, was a grade 2, slow-growing type of tumour. Just a few short months later, with Cat experiencing headaches again, further surgery revealed the earth-shattering reality that the tumour had progressed from grade 2 to grade 4. Cat’s family and friends all rallied round to help and to fundraise, resulting in the setting up of a fundraising group called Cat in a Hat. Tragically, by the spring of 2017, Cat was no longer responding to any treatments available. She passed away on 14th June that year.
“I started to think Cat would beat the brain tumour or, if not, at least keep it at bay for many years due to her strength and positive attitude. I even found that Cat’s brain tumour wasn’t always the last thing I thought about at night or the first thing I thought about when I awoke.”Read more
Charlie Carter-BatesCharlie was six years old when he was finally diagnosed with a GBM4 brain tumour after months of “migraines” accompanied sometimes with projectile vomiting and instances of eye pain. His parents were told that his chance of survival was 25%, although they later found out that it was a lot less.
“The day of the scan was the day our lives changed forever and was the worst day of our lives so far… I remember the feeling of utter despair. I can’t even explain the feeling – it was the most horrendous pain.”
Charlotte Barber defied the odds, living for 29 years after her brain tumour diagnosis when she had been given a 30% chance of surviving past the age of 13. She underwent treatment, which was cutting-edge for its time, at Addenbrooke’s Hospital in the late 80s, paving the way for future patients, and was part of the Childhood Cancer Survivor Study. Despite overcoming many hurdles and learning to live with the debilitating side effects of the disease, Charlotte sadly died on 17th May 2018 at the age of 37. Her mum Julie reflects on Charlotte’s journey and her desire to contribute to research in Charlotte’s memory.
“Her consultant has since told us that Charlotte was a pathfinder and a hero, and those undergoing treatment today owed her a great deal. She was a hero and my heart burst with pride to hear someone else say it. Her childhood was taken away from her by this cruel disease but she never once complained and that smile never faltered.”Read more
Christine Scott was diagnosed with a low-grade oligodendroglioma in 2011. Her prognosis was good and, despite epilepsy, she continued with a normal life – even continuing to ride her beloved horses. After five years however, the tumour became aggressive and even though she underwent surgery and treatment, Christine deteriorated. She died in 2018, aged 58, leaving her husband, five children, a granddaughter of less than one year, two horses and a dog.
“Over the course of the year, she went from walking normally to relying on a walking stick to a Zimmer frame to a wheelchair. Determined as ever, Christine had kept trying to ride throughout all of this – even if it was just sitting on the horses while being led around a paddock – but in summer 2017 she had to stop. Although she dealt with her illness fairly well, not being able to ride was extremely difficult for her.”Read more
Christopher ToddHusband, father, and grandfather, Christopher Todd was 63 when he was diagnosed with an aggressive grade 4 glioblastoma multiforme brain tumour after suffering violent headaches and stroke-like symptoms. As he underwent surgery, radiotherapy and chemotherapy his daughter Vicky set about raising funding for research to help get him better. With the support of his family, Christopher fought his illness but passed away in hospital in November 2016 at the age of 65.
“When dad was diagnosed I just couldn’t understand how this could happen. How can so many people have brain tumours yet so little be known? I was flabbergasted to learn that brain tumours kill more children and adults under the age of 40 than any other cancer yet receive so little funding. How can it be right that just 1% of the national spend on cancer research is allocated to this devastating disease? I cannot sit by and let this happen so I set about fundraising for Brain Tumour Research to help my dad get better.”
As a great-great grandmother, Claire’s pride and joy was her family and, aged 84, she was still able to drive, cook and care for friends and relatives. But, in November 2017, she suffered a seizure. Diagnosed with several brain tumours, her illness had irreversible effects on her personality and towards the end of her life she wasn’t even able to recognise her children. Since losing her mum, Claire’s daughter Amanda has fundraised for the Brain Tumour Research charity, and she is determined to raise awareness of how dreadful the disease can be.
“When Mum was discharged from hospital, it was horrible to see how badly the tumours affected her. She could no longer do the things she loved; she didn’t read, she struggled to make a cup of tea, and, no matter how hard she tried, she couldn’t even put letters in the boxes of her daily crossword. Her whole life was turned upside down.”Read more
Claire HollisterMy darling daughter, Claire, had her life cut short by a brain tumour - the very same disease which had killed my sister, Valerie, 10 years previously. Claire was just 30 years old when she passed away, just 14 months after diagnosis with a grade IV gliosarcoma.
“It was at this point I realised the “small lump” must be life threatening. It all felt so unreal - to go from everything being so normal and then there we were looking this deadly disease in the eye.”
Clive GathercoleHusband and father of four boys, Clive Gathercole was eventually diagnosed with a glioblastoma brain tumour after suffering months of health problems. He died in August 2012.
“In my anger I thought about complaining about the terrible care we received and the problems with securing a proper diagnosis, but I am not sure looking back at the past negatively is helpful, so instead as a family we are forging ahead with our fundraising plans to fund more research into brain tumours. I would hate to think of other families facing what we have been through, and think the lack of awareness of this disease is a tragedy in its own right.”