In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
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
Tom McEnteeTom McEntee, a banker who lived in Epsom, died just two years after his diagnosis with a glioblastoma multiforme (GBM) – a highly aggressive type of tumour – in November 2015, despite enduring several operations, chemotherapy and radiotherapy. He was 67 and left his wife Anne, their three children Niamh, Owen and Colette, and five grandchildren. Read more
Diagnosed with a multifocal grade 4 glioblastoma multiforme (GBM) in December 2018, 71-year-old Bob Witherspoon from Whitley Bay lost his life to this aggressive brain tumour just four months later. At his funeral, rather than flowers, his family requested a collection for Brain Tumour Research. Having raised over £700 to help fund research to prevent other families from going through the pain they have suffered, they now want to raise awareness of this cruel disease, by sharing their heart-breaking experience.Read more
Katie DeanKatie Dean was just six years old when she died of a brain tumour. Her diagnosis came after suffering from terrible headaches, which were dismissed as migraines for several months. Though it’s been 16 years since Katie died in July 2003 her dad Scott, an officer with Staffordshire Police, still remembers losing his darling daughter as if it were yesterday. Read more
Dean WoodDean was a healthy man who worked hard (up to 60 hours per week) as a builder, and then enjoyed a drink and playing pranks. He loved his family and was very loyal to his friends – he had the same best friend since the age of seven. When Dean was 27 he was diagnosed with a glioblastoma multiforme grade IV which he fought with so much courage and his indomitable sense of humour; nevertheless he was cruelly taken from us just seven months later.
“Dean will always remain in our thoughts and in our lives and we talk about him daily. We don’t want to shy away from the scary parts of this illness; we want everybody to see how brave Dean was. We, as a family, promise to continue the fight against brain tumours in his honour.”
Debbie was diagnosed with an aggressive glioblastoma (GBM) brain tumour just a short while after getting together with her partner Phil Holding, who she met at work. Having private health cover, Debbie underwent surgery and was treated at Harley Street Clinic, but survived just 13 months after diagnosis, passing away seven weeks before her daughter Vicky’s wedding, which she had been so involved in planning.
“Straightaway, I knew what was coming; I recognised the signs from when I lost my mum nine years previously. I checked with a nurse and she confirmed the worst. At 7am I called Debbie’s family and by 9am her brothers and sisters, her son, and mum and dad had all arrived. At midday on 21 July 2018, Debbie passed away, aged 58, with all of us by her side. Sadly, her daughter, who had been away on her ‘hen’ weekend arrived an hour too late.”Read more
Derek Lovatt was a popular Burton Upon Trent photographer whose life was cut short by a brain tumour at the age of 56. Though his death in 2001 left a devastating hole in the hearts of his wife Jennifer and their three children Chris, Ellen and Richard, he created lasting memories for his family to cherish. Ellen, 44, is now taking part in the Brain Tumour Research charity’s On Yer Bike campaign, and through fundraising she ensures her dad’s legacy lives on.Read more
Diana FordIn the beginning Diana only had very vague symptoms like never seeming to have enough sleep, or having a bit of a headache. But as her youngest child, Finlay, was just two years old neither she, nor the family took it seriously. However, around Christmas-time, there were various odd things which didn’t seem to stack up. Diana seemed a bit vague, like she was not really listening, and not always understanding.
Then came a week when Diana felt quite unwell and stayed in bed. On the second day she got up to go to the GP who suggested she go to the hospital for blood tests, which she did with difficulty. By Friday when Diana was leaving cups of tea untouched and complaining she had such a headache, I became really concerned. I called the doctor and insisted he came out to her and I also called her husband, Nick and suggested he came home. I thought Diana was having a mental breakdown or was very ill.
Diane WrightMum was diagnosed with breast cancer in 2005 and fought bravely against this. Two years later, she was given the all clear. She continued to have annual screening and was always relieved with the positive results she continued to have. Read more
Donna OsbourneDonna was healthy, apart from problems with high blood pressure which she probably inherited from her mother’s side of the family. She had been going to see the GP about it, who thought it might be a thyroid problem.
On New Year’s Eve, 2007, we were with friends and Donna felt faint and dizzy, although she didn’t actually faint. We sat her down and did all the things you do when someone feels faint. There was even a lady on hand at the party who used to be a nurse. We then decided to go home as Donna continued not feeling too good. She woke up fine the next morning.
Duncan ScottDuncan was an extremely intelligent, kind and thoughtful man. He was an avid fan of Formula 1 and Le Mans. In June 2015 he was diagnosed with a grade 4 glioblastoma multiforme. After an 18 month battle, he passed away aged 55. During the last weeks of his life he endured severe mental torture until he was admitted to a hospice where doctors and nurses were able to adjust his medication to prevent him from suffering anymore.
Here is Duncan’s story as told by his sister, Gayle:
“Duncan’s passing has left a huge hole in my life, as well as the many people whose lives he touched. His funeral was extremely well attended with many people voicing how he had “changed their lives for the better”. It seems so unfair that he was taken in his prime with so much joy to have and to give. I miss him dreadfully.” Read more
Eddy KirbyWithin a fortnight of walking one of his two beloved daughters down the aisle on her wedding day, Eddy Kirby was suddenly taken ill and after tests he was diagnosed with an aggressive glioblastoma multiforme (GBM) brain tumour. It was inoperable and although he underwent treatment, Eddy’s condition deteriorated rapidly. He passed away, aged 64, on 7th March 2015, his late father’s birthday. In addition to leaving two daughters, Emma and Sarah, Eddy also left a partner Carol and his mother, Marjorie, aged 93. Read more
At the age of 38, Edward Morrison was diagnosed with a low-grade ependymoma that appeared to pose little threat. After 10 months of treatment, there were no traces of tumour left and it seemed that Edward had beaten the disease. Sadly, the tumour made an aggressive return and, despite best efforts to treat it, Edward’s life was cruelly taken away from him in January 2018.
“Edward’s stubbornness was extremely frustrating at times, but his sense of humour provided some relief from the hopelessness of the situation. One day I asked him: ‘how are you feeling?’ and he replied: ‘not as bad as the guy who signed off my medical insurance’.” Read more
Elaine Neesam-Smith’s story reminds us just how devastating a brain tumour can be and how desperately a cure must be found. In October 2017, the 52-year old collapsed and was placed in an induced coma. Little did she know, a highly aggressive glioblastoma multiforme (GBM) was the cause. The tumour was inoperable and there were no treatment options. Sadly, the much-loved mum, grandma, wife and friend, died just six months later.
“Now it’s six months on and we’re taking each day as it comes. Kieran, Paul and I are plodding along and supporting each other through our grief. Memories of Mum are everywhere and sometimes it’s a comfort and sometimes it’s too much to bear. Ellie and Heidi miss their grandma so much and they call her their ‘star in the sky’. Mum was such a doting grandma and it breaks my heart that she won’t see them grow up.”
Elizabeth PerkinsA mum of three daughters and a busy PA for Croydon Council, Elizabeth’s symptoms were initially thought to be nothing more than sinusitis, but sadly turned out to be an aggressive and incurable brain tumour.
Despite two surgeries, chemotherapy, radiotherapy and a drug trial, Elizabeth lost her fight with the tumour two years later, her immune system unable to fight off a chest infection and sickness bug caught during her final round of chemo.
“The tumour changed her into a completely different person. The fierce, feisty woman that had brought me up was slowly turning into a passive pussy cat.”
Emma HalsteadMy stylish, creative, determined, positive, intelligent, adored, younger sister was diagnosed with a benign brain tumour in April 2012 when she was aged 19. She underwent a wide-awake craniotomy in November 2012. In July 2015 the tumour became malignant and aggressive and was diagnosed as a glioblastoma multiforme grade 4. Emma underwent chemo and radiotherapy, but nothing could save her. She was admitted to hospital in March 2016, just days after doing a sky dive for Brain Tumour Research. Several weeks later, there came a point when every time Emma moved she had a seizure. On 13th May 2016 she slipped peacefully away, aged just 23.
“Emma truly was an inspiration to us all. When she discovered she was ill, she adopted an attitude of: ‘I’ve got a tumour, but I’m still going to get on with life.’ This positive attitude was to stand her in good stead right up to the end. She was never afraid to ask tough questions and each time she received bad news she would quickly pick herself up and move on. One time she simply said: ‘Ok, pass me the grapes, let’s get on with it’.” Read more
The second of three children, Eva was just four years old when she was diagnosed with a diffuse intrinsic pontine glioma (DIPG), the most deadly of all childhood brain tumours for which there is no cure. Faced with the bleakest possible prognosis, her parents fought to find treatment which would offer her more time. Sadly Eva passed away within a year, her severely damaged body succumbing to pneumonia.
“We have been plunged into this nightmare world where hardly any money goes into DIPG and yet this hideous form of brain tumour kills up to 40 children every year in the UK alone – that’s two classrooms full of infant school-aged kids. Like our daughter, these children are normal and happy until one day they fall over. Gradually their bodies shut down while maintaining complete cognitive awareness. They are fully aware until their arms and legs stop working. They become locked-in, a prisoner in their own shells – can you imagine anything worse for a fidgety and energetic five year old? Their young, healthy organs keep them going for much longer than an adult’s until, finally, they stop functioning. Our DIPG kids die a truly horrible death, slowly over months. And, as parents, we watch every minute of it with desperation and helplessness. The reality of DIPG is a living nightmare.”Read more
First-time parents Kelly and Marc Evans were overjoyed at the safe arrive of their beautiful baby daughter Evie on 9th March 2007. Their first sense that anything was wrong came when she was 18 months old. Eleven months later, after being examined in connection for repeated vomiting, a CT scan revealed a mass in Evie’s brain. She was diagnosed with an extremely rare Atypical Teratoid Rhabdoid Tumour (AT/RT), most prevalent in the under-three’s. She endured surgery and treatment but passed away, with her parents at her side, on 4th November 2009. She was just two-and-a-half.Read more
Fin ChurchFundraiser, karate black belt, Guinness world record holder and Child of Courage, Fin Church lost his battle with brain cancer at the age of 11. The eldest child of Penny and Wayne Church, Fin was also big brother to Kenzie and Tegan. In the 17 months after his diagnosis, Fin endured neurosurgery, chemotherapy and radiotherapy, taking part in trials including testing the efficacy of re-purposed drugs. In his final days, he dictated a letter in which he talked of his love for his family, his fondness of chocolate and curry, and his fear of losing the fight.
“I am ashamed to admit that there came a stage when I wished Fin had leukaemia. Surely that would be better, there were treatments and things would be OK wouldn’t they? Investment in research and increased public awareness meant leukaemia was no longer a death sentence. But where is the investment and subsequent improvement in outcomes for patients with brain tumours? As we fought as hard as we could for Fin, we were sickened to learn that the treatment for brain cancer is antiquated and barbaric, as cruel as the disease itself.”
Finnbar was a happy, active five-year-old boy, enjoying life to the full, when he started experiencing dizziness and later staggering when walking. After several trips to the GP, his family eventually got him referred. Tragically his diagnosis with a low-grade astrocytoma brain tumour, was changed a couple of months later to a more aggressive glioblastoma multiforme (GBM). His parents, Tristan and Claire, were given the devastating news that there was nothing that could be done to save their son. Just five months after being diagnosed, Finnbar passed away, just weeks before his sixth birthday.
“We are determined to see something good happen in Finnbar's name and memory. We hope that we can use our experience to make things better for other families that find themselves going through similar, heart-breaking situations, and ultimately to bring about an end to the evil of childhood brain tumours.”Read more
Fiona ReidSadly, Fiona passed away on 11th December 2017. This story was written before her passing but will be updated fully at a time appropriate for her family to whom we send our sincerest condolences.
Fitness fanatic Fiona discovered she had a brain tumour after collapsing at the gym. In the last six years she has undergone surgery and treatment as her tumour, classified as “low-grade” has continued to grow and cause paralysis. With the support of her husband, mother and friends, Fiona remains optimistic and will be supporting Wear A Hat Day 2016.
“I have known from the beginning that my tumour can’t be cured but I remain relatively optimistic. New treatments are coming out and I hope that there might be trials which I could be put forward for. My husband Andy is a very positive person. He has been a tower of strength and has kept me going. I see my mum every day and have great support from my friends.” Read more
Frank SmithMy brother, Frank, was 58 years old when we lost him to a brain tumour – two years and 10 months after he was diagnosed with a grade 4 glioblastoma multiforme.
“It seems so cruel that Frank died before his time, after all he went through during his life, losing his partner and unborn child, bringing up their two children alone, supporting Frank junior following his diagnosis with a tumour and then his very own personal battle.” Read more
Fraser CullenLittle Fraser Cullen was just three-and-a-half months old when he was diagnosed with an aggressive brain tumour. He underwent surgery and his parents Vicky and Warren had to make the agonising decision whether to put him through gruelling high-dose chemotherapy which might extend his life by just months or opt for palliative care. Fraser himself helped them to make their decision by smiling at his mum as she sat in Fraser's room with the consultant giving them the news. Treatment proceeded giving the family precious time but Fraser passed away a year later.
“At first, we were dismissed as over-anxious, told our baby had a sore throat and sent home. In fact, the situation was so grave that, with or without treatment, the brain tumour meant there was just a five per cent chance that Fraser would live to see his fifth birthday. Chemo could buy us time but not much, as little as a couple of months. As the country celebrated the New Year, we were making the toughest decision any parent could face. It was so, so hard. We didn’t want to put Fraser through chemo that wasn’t going to work but of course we didn’t want to lose him. As the doctors spelt out the options I looked over at Fraser and he smiled back at me. How could I give up on him?” Read more
Gaye ChaffeA former officer in the Metropolitan Police, Gaye Chaffe was diagnosed with an oligodendroglioma brain tumour in 1992. Her husband Simon supported her through two craniotomy procedures and subsequent treatment. The tumour spread to her brain stem and she passed away six years later in her husband’s arms, leaving two sons aged eight and three. Read more
Gemma EdgarGemma's story was written while she was still with us. Sadly Gemma passed away on 19th December 2018. We will update her story fully at a more suitable time. Our heartfelt condolences go out to Gemma's family and all who knew her at this immeasurably sad time.
Gemma, 29, a paediatric nurse at Colchester General Hospital, and a wife and mother, was diagnosed with a malignant brain tumour after just a few days of migraine-type symptoms. Her sons, Noah and Dylan were just eight weeks and two years old at the time. Read more
George Michael HarrisonGeorge was diagnosed with a brain tumour at the age of 25. He underwent surgery and married his childhood sweetheart Georgina 13 months later. Sadly his tumour returned five years later. He had radiotherapy and chemotherapy which left him partially paralysed with double vision and memory problems along with other side effects. Together with Georgina, George’s mum Sondra cared for him during his last months. He passed away with them and his sisters by his side in June 2010. Read more
Georgie BeadmanGeorgie Beadman wife, mother, daughter, and sister, died seven years after being diagnosed with a low- grade glioma. She was a talented potter who loved music and the arts. In February 2015, Georgie died at the age of 41 leaving a husband and two small children.
“It is desperately sad to think that brain tumours kill more children and adults under the age of 40 than any other cancer and I was shocked to learn this area receives just 1% of the national spend on cancer research. A number of the girls who Georgie met during her year as a debutante are now involved in fundraising to support vital research into brain tumours which is wonderful. We were unable to help Georgie but I am sure that we can help others.”
A loving wife, mother and grandmother, Gillian built her life around creating a happy home for her family. She lived in the Trossachs and enjoyed the natural beauty of Scotland where her husband worked as a deerstalker with the Forestry Commission. At first misdiagnosed with multiple sclerosis, her anxious family were finally told she had a tumour of the central nervous system and she passed away six months later at the home she was dedicated to making.
Glendon SnapeSadly, Glendon passed away on 12th October 2017. This story was written before his passing but will be updated fully at a time appropriate for his family to whom we send our sincerest condolences.
Glendon Snape was looking forward to starting his honeymoon when he was struck with a terrible headache during the journey. Never setting foot in the hotel, Glendon, 51 from Preston, was instead rushed into hospital by ambulance from the hotel car park. The newly-weds, with four children between them, were devastated to hear that Glendon had a grade four glioblastoma multiforme, with possibly just months to live.
“When the doctors told me I had 14 months to live, my heart just sank and knowing more became an obsession; I just had to try to find a way out of the nightmare... It’s like an addiction but it’s kept me alive.”
Husband, son, father and step-father, Glenn McMahon was diagnosed with an aggressive glioblastoma multiforme stage 4 (GBM) brain tumour after experiencing co-ordination problems on the golf course. He married Wendy in February 2014 and, knowing their time together would be cut short, the couple set about making the most of their lives through travel, socialising and their mutual love of fine food. Glenn died in June 2015 at the age of 53.
“To be told it was a brain tumour was like being hit by a bus. Glenn asked straight away how long he had and was told the short prognosis. We were devastated. We had begun to suspect Glenn might have motor neurone disease and never dreamt it would be a brain tumour. We had both been married before and having found each other now faced our future which was going to be cut short.”Read more
Godfrey ButchersHusband, step-father and grandfather, Godfrey was laid to rest on what would have been his 25th wedding anniversary. His widow Shirley chose music from their marriage ceremony for the funeral which took place near their home on the Isle of Wight. Godfrey was 71 when he passed away just ten weeks after being diagnosed with a glioblastoma multiforme (GBM) brain tumour.
“A proud man, Godfrey didn’t want lots of visitors or people fussing around him. He was thinking of others and wanted to spare them the pain of seeing what was happening to him. Close family came and it was a joy to see the love in his eyes as our granddaughter, who was just a few months old, sat on the bed with him.” Read more
Graham Addison was a larger-than-life character at the heart of a tight-knit family. His brain tumour diagnosis in 2015 was a terrible blow to his wife, five children and nine grandchildren, but the family remained positive as Graham responded well to surgery, radiotherapy and chemotherapy. However, after a second operation Graham deteriorated rapidly and the love and support of his family couldn’t halt the aggressive glioblastoma multiforme (GBM). He passed way in September 2016, aged 66.
“Dad came out of theatre a different man and, for the first time, he was noticeably in decline. He couldn’t remember his own date of birth or even what day of the week it was. He was so brave but I remember once seeing the fear in his eyes when it dawned on him that his brain was failing him. How scary it must have been for him – to go from such a bright and intelligent man to someone who could no long remember how to use his mobile phone.”Read more
Garden designer Guy Farthing had just turned 60 when he was diagnosed with a low-grade brain tumour after suffering stroke-like symptoms. With surgery not an option, Guy underwent radiotherapy and chemotherapy. Sadly, over time the tumour became more aggressive and after nearly 10 years of battling the disease, Guy died in October 2017, leaving wife Jenny, children Kathy and Mark, and granddaughter Immie.
“It wasn’t until a few months later that we received a letter through from Southampton hospital asking him to attend for a pre-assessment. On arrival, we were given a letter which knocked us for six, as it stated that, two days later, Guy would be admitted for a biopsy on his brain tumour. We arranged to speak to the surgeon for clarification as we felt they must have got it wrong or maybe the letter was supposed to be for someone else.” 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?”