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
Logan passed away from a DIPG brain tumour 11 months after diagnosis. Shocked to find that any childhood cancer was incurable and at the lack of funding going into research of childhood cancers, his grandmother Fiona is doing everything she can to bring about change, including launching a petition to the Government.
Having finished a highly decorated career in education, Lesley Kirby-Klappholz was looking forward to her retirement. Her professional life had spanned a long but enjoyable 38 years, which included 11 years of headship. However, devastatingly on 31 May 2019, Lesley was diagnosed with a brain tumour out of the blue. Three weeks later the diagnosis was compounded, following a biopsy which distinguished her tumour type as highly aggressive.Read more
Fiona Bingham was just 33 when she passed away at her home in Chesterfield in March 2017. The guidance officer at Chesterfield College left behind her husband, Mark, parents Dodie and John Rutherford and her older brother, Alastair. Fiona, an International Hospitality graduate, was diagnosed in March 2015, following an eye test and subsequent scans. She underwent brain surgery, radiotherapy and chemotherapy to treat the tumour but, sadly, in February 2017, Fiona and her loved ones were given the devastating news that the treatment had stopped working and was being withdrawn.Read more
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