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
Ava BallAva’s mother was alarmed to find a lump on the back of her two-month-old baby’s head, but was told by her GP it was a soft spot. The lump had grown to the size of a tennis ball when Ava finally had an MRI scan, aged seven months. A biopsy determined the lump was a primary malignant melanocytic brain tumour with intra as well as extra-cranial components. After surgery, there was nothing more which could be done to save little Ava and she passed away in her mummy’s arms, aged just eight months.
Andy married his childhood sweetheart and together they had two children and a lovely life. But then Andy started shaking uncontrollably, leading eventually to his diagnosis with an inoperable and incurable DIPG brain tumour, much more common among children. Radiotherapy changed his personality and his marriage broke down. Andy passed away three and a half years after his diagnosis, aged 33.Read more
Sue’s career took her from shorthand typist to HR director. She found her soul-mate in Mark who also loved the great outdoors and together they had a wonderful son, but Sue was diagnosed with an aggressive brain tumour which killed her just 15 months later aged 55. Six months after Sue’s diagnosis, Mark was diagnosed with blood cancer.Read more
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 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
We are grateful to Fiona who worked with us in January 2016 to share her story here. Sadly, she passed away on 11th December 2017. We remember Fiona 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.
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.”
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