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
Aaron IrvineAaron was first diagnosed with a brain tumour at the age of two and a half, but not without his mother having to fight for six months to get doctors to take his symptoms seriously. The operation and subsequent radiotherapy left him with lots of physical and educational disabilities, but he got on with life and never complained. At the age of 29 his tumour came back – his mother (who has her own disabilities) had to fight to get any support for him. Aaron passed away five months later in 2011. Read more
Aaron WoodStudent Aaron Wood died at the age of 24, four years after being diagnosed with what was thought to be a low-grade brain tumour, which later turned out to be a grade 3 anaplastic astrocytoma. He had undergone surgery and radiotherapy, and went back to uni to complete his studies to graduate with a 2:1 in philosophy. His dying wish, for scientists to use his brain to further their knowledge of brain tumours, was fulfilled. His mum Crystal hopes that his story will inspire others to never give up.
“Aaron saved my life before he was even born. I had a car accident when I was four months pregnant and it was a wake-up call, the moment I realised I had to start taking care of myself for the sake of my unborn child. A brain tumour robbed Aaron of the prime of his life and robbed me of my sunshine. It is so painful to think he saved me by giving me something to live for and yet, 24 years later, I was unable to save him.” Read more
Abigail LightbownThe first signs that there was anything wrong with our daughter began around the end of August 2010 when Abigail started being sick every morning. Doctors prescribed a number of different medications to treat her for acid reflux, but none seemed to help and, by the middle of October, she had lost over half a stone in weight as her appetite had diminished. It was at this point that we did briefly consider whether she had an eating disorder and even chased her upstairs on one occasion to check whether she was making herself sick.
Over the following weeks and months, Abigail underwent a series of tests, including a comprehensive examination of her eyes, but all came back clear, even the eye test, which can be a key method for indicating the presence of certain types of brain tumours.
Finally, an MRI scan was booked for 18th February 2011, but not long before this was to happen, Abigail collapsed and was taken to Bolton Royal Hospital. Doctors performed various manual dexterity tests on Abigail which all came up as normal and as the scan was booked for a few days later they decided to wait. It was only then, at the age of nine, that she was finally diagnosed with a medulloblastoma brain tumour, around 20 weeks after we first had taken her to the GP about her vomiting.
Adam BarclayAdam and Emma met through their mutual love of cars. They had settled down with two small children, were happy at work, very much in love and engaged to be married. Despite numerous doctor’s appointments and hospital visits, Adam’s symptoms were repeatedly dismissed. By the time his brain tumour was diagnosed it was too late. He had several massive seizures and underwent emergency surgery. Adam died on New Year’s Day 2016 without regaining consciousness. He was just 27.
“Adam’s symptoms were repeatedly dismissed as nothing serious. As the brain tumour grew, he had a series of massive seizures. He went into surgery but never woke up. We had been planning our wedding but now I’m alone at 24 and my children are left without their daddy. Our lives have been destroyed and it is all so unnecessary – had he been diagnosed earlier he would still be with us now.”
We are grateful to Adam who worked with us in October 2017 to share his story here. Sadly, he passed away on 23rd December 2019. We remember Adam as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.
A seizure struck Adam down out of the blue and led to his brain tumour diagnosis. He underwent surgery, radiotherapy and chemotherapy and was well enough to take part in a gruelling cycle challenge in the heat of the Arizona desert. He completed the event with his father who, 15 years earlier, had lost his mother to a brain tumour.
A farmer and keen hunting man, Adam was diagnosed with a high-grade glioblastoma multiforme (GBM) brain tumour. Surgery was not an option and he underwent chemotherapy and radiotherapy but passed away at home 11 months later, at the age of 42.
“Somehow Adam found the strength to cope. He was a trooper and his concern was always for others. His tumour was a grade four glioblastoma multiforme (GBM), the worst it could possibly be. I don't think Adam really knew how high-grade his tumour was, but he was aware that it was inoperable and the prognosis was bleak; he had probably just two years to live, five years at best. Radiotherapy and chemotherapy began and that took us up to March and he lived for just two months after that.”
Director Adrian Vitoria was shooting a film in the States when he was diagnosed with a brain tumour. He underwent surgery and self-funded pioneering new treatment, continuing to work on what was to be his final project while having chemotherapy. Adrian returned to Suffolk in the later stages of his illness. He passed away in November 2016 at the age 48.
“I don’t think people are aware of how cruel this disease is. It was torture for me to watch as Adrian was robbed of his mobility and his faculties especially as he was such a great communicator. He became bedridden, unable to even lift his head. It was an agonisingly slow decline as my brother became locked-in as the tumour grew.”Read more
Our first born child, Aidan, was just 16 months old when he first became ill. He was diagnosed with a variety of different infections, but five weeks later we were given the horrific news he had an aggressive medulloblastoma brain tumour which had also spread into his spinal cord. Aidan was given the best treatment options available at the time and fought a brave battle, but despite everything, we still lost him just one month shy of his fifth birthday. Now we want to raise awareness and help prevent other children from having to face a similar fate.
“Research into paediatric brain tumours and how to treat them effectively is the only thing that can save the lives of other children like Aidan. A greater understanding of how the different tumour cells develop, as well as discovering more effective treatments that target those specific cells, will not only reduce mortality, but will also improve the quality of life of children who survive brain tumours.”Read more
Gloucestershire husband, father, and grandfather, Alan Davis, was 67 when he was diagnosed with a grade four glioblastoma multiforme (GBM) brain tumour, after suffering from memory loss, and problems with his balance. Due to its size and location, surgery wasn’t an option and an intense course of radiotherapy was prescribed. Unfortunately, the treatment didn’t help and Alan died in January 2009 less than six weeks after his diagnosis.
“It was early November that year when I remember having this one conversation with dad and he just couldn’t get his words out. The quick-witted, articulate and confident man I knew was not the man that was talking to me and that’s when I insisted on taking him to the GP as this wasn’t right.”Read more
It seemed nothing would tear childhood sweethearts Sandra and Alan May apart. After 30 years of married life, they were given the devastating news that Alan had a highly aggressive brain tumour. Just 10 months later, in August 2016, he passed away, leaving his parents, sister, wife, two sons and three granddaughters. Facing life without her soulmate, Sandra has run a fete in memory of her husband for the past three years, alongside a football tournament organised by her son, Shane, and has helped to raise around £5,400 for the Brain Tumour Research charity.
“My grieving process began as soon as Alan was diagnosed. It felt like somebody had ripped my heart out and, when I look back, the whole period was a total blur. It seemed as if I was on standby. My life was completely out of control, but I had to stay strong and put on a brave face for Alan. In the final days I had to agree to Alan’s wish, to stop treatment, so that he could pass peacefully away. It felt like an eternity but it was the last act of love.”Read more