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
Laura, her partner Kev and daughter Eva, are taking part in a Walk of Hope to help find a cure for the disease which took her Mum, Debbie, at the age of 58. Debbie outlived her prognosis but endured the loss of her only son as she struggled to cope with the physical and mental demands of her own illness. At her Mum’s request, Laura underwent radical surgery because she was genetically predisposed to getting breast cancer and ovarian cancer. The family has been left wondering why treatment options for brain tumours haven’t kept pace with other types of cancer such as those Laura was at risk of.Read more
Ben was just 11 when he started to experience symptoms including sickness. A month later he was diagnosed with a glioblastoma multiforme and his devastated mum was told he had less than two years to live. He underwent surgery and treatment, but sadly died just eight months later in December 2019. His twin brother Jack was diagnosed with leukaemia shortly afterwards and is now undergoing treatment.Read more
Colin Burt, from Newcastle-Upon-Tyne, was 49 when he died from a brain tumour he had bravely fought for five years. Colin was happily married to Fiona and together they enjoyed a life full of love, travel and music. Colin underwent two brain surgeries and several courses of radiotherapy before his treatment options eventually ran out. He died at home in August 2019, leaving his 43-year-old wife Fiona heartbroken and facing the rest of her life without her ‘soulmate’.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.
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