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
Daniel Franklin, a kitchen assistant from Worthing, West Sussex, was diagnosed with a glioblastoma (GBM) in October 2020 after suffering with balance problems and sickness. The location of the tumour on his brain stem rendered it inoperable but he did have radiotherapy. He went on to have chemotherapy, which proved ineffective, and a second round of radiotherapy, which he complemented with holistic treatments. Sadly, from August 2021, his health began to deteriorate and he died at home three months later at the age of 26.Read more
James Lamerton, a teacher from Leigh-on-Sea, Essex, was diagnosed with a brain tumour in his pineal gland in October 2021, later identified as a grade 4 glioblastoma (GBM). He was being treated for sleep apnoea at the time and was taking medication for migraines thought to be connected to the condition. He suffered complications following surgery and died five weeks after his diagnosis, at the age of 40, leaving behind his wife, Myriam and their two-year-old daughter, Layla.Read more
Natalie from Coventry was diagnosed with a brain tumour when she was 27, after suffering a seizure out-of-the-blue. A scan at University Hospital Coventry and Warwickshire showed a mass on her brain. Over the next four years, Natalie had four operations and endured countless rounds of gruelling chemotherapy treatment. After initially being diagnosed with a glioblastoma (GBM) a clinical trial found Natalie was living with an extremely rare type of brain tumour. Desperate to fight the disease, Natalie paid for innovative treatment, travelling regularly to Germany, however the cancer was too aggressive and she died aged 31 in November 2021.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
We are grateful to Eva and her dad Paul, who worked with us in April 2020 to share her story here. Sadly, Eva passed away on 8th January 2021. We remember Eva 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.
Nine-year-old Eva Williams, from Wrexham, was diagnosed with a high-grade diffuse intrinsic pontine glioma (DIPG) in January 2020. The survival prognosis for this type of brain tumour – the deadliest type of childhood cancer – is eight to 12 months. She has undergone radiotherapy and her family has been told there is no further treatment available on the NHS. Desperate to help their daughter, Eva’s parents Paul and Carran are crowdfunding to raise the £250,000 needed for private treatment in the US.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.”
Young Finn from Barry in Wales was just 12 when he died from a diffuse intrinsic pontine glioma (DIPG) in July 2018, almost a year after his diagnosis. After experiencing double vision, a trip to the optician led to Finn being referred for an emergency scan at University Hospital of Wales, in Cardiff. The scan revealed devastating news of an inoperable mass on his brain stem which carried with it a stark prognosis of nine to 12 months. Despite radiotherapy to prolong his life, Finn died six days short of a year after his diagnosis and never got to meet his nephew.
To help her process Finn’s death, sister-in-law, Alana has written a book to share Finn’s memory with her young son, and other families who may have found themselves in the awful situation of having to explain a brain tumour to a child.Read more
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