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
Victor Ortiz and Assunta Trapanese lost their only child to a deadly brain tumour in 2019. Isabella Ortiz was just three when she was diagnosed with DIPG at the Royal Manchester Children’s Hospital in June 2017 and died at the age of five. Her parents desperately sought private treatment and will remain forever grateful for the support of their community, who remain by their side through the darkest days, as Isabella succumbed to the disease and they said the cruellest of goodbyes.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?”
Paul and Helen never anticipated that their wonderful family life with their much-wanted daughter Matilda would come crashing down with Helen’s diagnosis with an aggressive brain tumour. In the four and a half years she survived with a glioblastoma multiforme, Helen underwent surgery four times as well as chemotherapy and radiotherapy treatment.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 EdgarWe are grateful to Gemma who worked with us in May 2015 to share her story here. Sadly, she passed away on 19th December 2018. We remember Gemma 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.
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 SnapeWe are grateful to Glendon who worked with us in May 2017 to share his story here. Sadly, he passed away on 12th October 2017. We remember Glendon as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.
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