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
Husband and father-of-two David was just 39 when he died. He was initially diagnosed with a low-grade oligoastrocytoma brain tumour when his wife was 31 weeks pregnant with their first child. He underwent gruelling chemotherapy and radiotherapy and also had immunotherapy in a bid to arrest the growth of the tumour which over time changed to a grade four glioblastoma. He passed away in November 2016.
“David was dying and there was nothing more which could be done. He had been in 24 hour intensive care and now I was being advised to take him home and care for him myself. How was I to do that? Although he was terminally ill, at 39 David was too young for a nursing home and, ironically, not close enough to death for a hospice.”
David Kingston sadly passed away on Friday 9th November. We will update his story fully at a more suitable time. Our deepest condolences go out to his wife Kim and their family at this very sad time.
Software sales manager David Kingston was diagnosed with a low-grade brain tumour nine years ago. He underwent surgery and follow-up treatment and now faces more chemotherapy after his tumour began to regrow, this time designated as high-grade. He is married with two children and endured the loss of his 20-year-old daughter to the genetic condition cystic fibrosis four years ago.
“This is my life, this is the hand I have been dealt and I have to get on and live it as best I can. I am determined not to let my illness define me or rule my life. My wife has been incredible, having always been by my side. Thanks to her, and the amazing group of friends we have, it is overwhelming to feel their constant love and support. With the introduction of social media, one of the sweetest things is when someone gets in touch after 25 years and wants to know how I am coping.”Read more
David LeatherbarrowDave was just 34 and with two daughters aged five and two when he died from an aggressive glioblastoma multiforme (GBM) in January 2015. Previously fit and healthy, his wife Diane felt he was taken away from them bit by bit as radiotherapy and chemotherapy changed him physically and mentally.
“Jessica was just a baby but it was so hard for Charlie and I tried to explain that daddy’s medicine was to blame. It got to the stage where not only was he behaving like someone else, he looked like someone else too. Dave was a big man, 6ft 1ins tall and toned. During his treatment he put on around five stones in weight and ballooned to around 19 stones. He needed all new clothes and even then wasn’t comfortable in anything. Despite this, he was still the person I loved more than anything and it was so hard to see him struggle with the physical and mental changes when, other than be there when he needed me, there was nothing more I could do.”
Dean WoodDean was a healthy man who worked hard (up to 60 hours per week) as a builder, and then enjoyed a drink and playing pranks. He loved his family and was very loyal to his friends – he had the same best friend since the age of seven. When Dean was 27 he was diagnosed with a glioblastoma multiforme grade IV which he fought with so much courage and his indomitable sense of humour; nevertheless he was cruelly taken from us just seven months later.
“Dean will always remain in our thoughts and in our lives and we talk about him daily. We don’t want to shy away from the scary parts of this illness; we want everybody to see how brave Dean was. We, as a family, promise to continue the fight against brain tumours in his honour.”
Debbie was diagnosed with an aggressive glioblastoma (GBM) brain tumour just a short while after getting together with her partner Phil Holding, who she met at work. Having private health cover, Debbie underwent surgery and was treated at Harley Street Clinic, but survived just 13 months after diagnosis, passing away seven weeks before her daughter Vicky’s wedding, which she had been so involved in planning.
“Straightaway, I knew what was coming; I recognised the signs from when I lost my mum nine years previously. I checked with a nurse and she confirmed the worst. At 7am I called Debbie’s family and by 9am her brothers and sisters, her son, and mum and dad had all arrived. At midday on 21 July 2018, Debbie passed away, aged 58, with all of us by her side. Sadly, her daughter, who had been away on her ‘hen’ weekend arrived an hour too late.”Read more
Derek Lovatt was a popular Burton Upon Trent photographer whose life was cut short by a brain tumour at the age of 56. Though his death in 2001 left a devastating hole in the hearts of his wife Jennifer and their three children Chris, Ellen and Richard, he created lasting memories for his family to cherish. Ellen, 44, is now taking part in the Brain Tumour Research charity’s On Yer Bike campaign, and through fundraising she ensures her dad’s legacy lives on.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