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
Ray RosenbergRay Rosenberg was 48 when he died in 2001 after a six-year battle with an incurable brain tumour. Ray is remembered by all those who knew him as a charismatic, larger-than-life character, dedicated to the Jewish community he was part of in Birmingham. Ray had many great achievements to his name, from a successful career in law to a legacy of community projects in his home city. Ray lives on in his wife Adrienne, his sons Simon, Jeremy and Ben and now his grandchildren five-year-old Ray, three-year-old Gabe and Max, aged one. Read more
Skye was four-years-old when he started feeling nauseous in the morning and then began vomiting. A month later, after his parents insisted on him being referred to a paediatrician, Skye was diagnosed with a grade 4 medulloblastoma brain tumour. After surgery and treatment following the now withdrawn Milan Protocol, Skye developed radio-chemo neurotoxicity which caused tetraplaegia and eventually tragically led to his death less than a year later.Read more
Jorja-Rose was the youngest of six children, adored by her parents and siblings alike. Aged just 15 months, she was diagnosed with a rare and inoperable pineoblastoma brain tumour and underwent chemotherapy and a stem cell transplant which gave her six months of good health. Sadly, Jorja-Rose suffered a relapse and passed away just three months after her parents got married. She was just two years old.Read more
Garden designer Guy Farthing had just turned 60 when he was diagnosed with a low-grade brain tumour after suffering stroke-like symptoms. With surgery not an option, Guy underwent radiotherapy and chemotherapy. Sadly, over time the tumour became more aggressive and after nearly 10 years of battling the disease, Guy died in October 2017, leaving wife Jenny, children Kathy and Mark, and granddaughter Immie.
“It wasn’t until a few months later that we received a letter through from Southampton hospital asking him to attend for a pre-assessment. On arrival, we were given a letter which knocked us for six, as it stated that, two days later, Guy would be admitted for a biopsy on his brain tumour. We arranged to speak to the surgeon for clarification as we felt they must have got it wrong or maybe the letter was supposed to be for someone else.” 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?”
Holly Atkins Fooks
Holly was just 11 when she passed away in September 2017, less than two years after being diagnosed with a highly aggressive brain tumour for which there is no cure. She endured two brain surgeries; chemotherapy and radiotherapy, the maximum amount a child could be given. Her family was devastated when, despite treatment, the brain tumour grew back leaving Holly disabled and bed-bound.
“Holly always wanted to live in a camper van; she loved them, and so she travelled to the crematorium in a specially-converted camper van with pink streamers waving from the roof corners. We all wore something pink in her honour. Her casket was pink with rainbows and her floral tributes included a unicorn head. She went with her faithful Dolly and Doggy and we all sprinkled fairy dust over her casket as we said goodbye. We think she is out there somewhere in a special place, chasing unicorns and rainbows, riding ponies and making fun of us when we do silly things – just as she used to do. We will never forget her.”Read more
Holly had a headache which wouldn't go away. An MRI scan revealed a brain tumour in a very inaccessible place. Now she is a teenager trying to live a normal life in between 3 monthly scans.
We are grateful to Holly who worked with us in February 2010 to share her story here. Sadly, she passed away on 18th December 2017. We remember Holly 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.
Hugh WalkerHugh was 46 when he passed away on the 25th September 2013, just four months after diagnosis. We had been together for 20 years and married for 14 of them. Between us we had twins – George and Jasmine who were just eight years old at the time, while Hugh also had two grown up children – Joshua and Naomi from a previous relationship. We were all very close and remain so.
“During the four months Hugh survived following his diagnosis, he was a pillar of strength. He knew he was dying, yet he spent lots of time with me talking and passing on his strength. He told me his goals and what he wanted me to do with the children and for myself. He asked that he be cremated and buried under the apple tree in the garden and that a friend of his should make a bench so that we could sit there and be with him.”
Ian DaviesIan and Karen got together later in life after Karen had been on her own for 10 years following the breakdown of her first marriage. They had 12 blissfully happy years and were looking forward to an early retirement, until Ian was diagnosed with three brain tumours. He passed away just nine months later, aged 49. Read more
Ian Lowe’s brain tumour story is yet another example of how cruel and devastating the disease often is, and how desperately a cure needs to be found. After a routine cataract operation, the 56-year-old was told the disturbing news that a mass was sitting behind his eye. Ian was then diagnosed with a large and aggressive CNS lymphoma and his treatment options were extremely bleak. Just two months later, on Valentine’s Day 2017, Ian died, leaving an irreplaceable hole in the lives of his family.
“In hindsight, Dad wasn’t quite right. He wasn’t himself. We’d be talking about one thing and he’d get confused and answer about something completely different. I guess we all just put it down to the fact he’d had a few drinks and, Dad being Dad, he just laughed it off and made a joke out of it. A moment that upsets me now, looking back, was when we said our goodbyes and he gave me such a heartfelt hug, it was as if he somehow knew he might not see me again.”Read more
Ian MeekIn 1995 Ian was diagnosed with a brain tumour. Married to Sally with three children, Ian counted himself one of the lucky ones because he survived so long. In 2009 the tumour turned cancerous and he had to undergo an operation to remove part of it and then undergo a fairly intensive period of chemotherapy whilst training for the famous three peaks challenge, which became known as Meek’s Peaks. Sadly Ian passed away on 1st August 2012 leaving a legacy of research at Leeds University having raised over £105,000.
Ian WalshFormer fireman and pub landlord Ian Walsh was taken ill at Christmas and, within a month, he was diagnosed with a high-grade glioblastoma multiforme (GBM) brain tumour. He passed away in August 2015, just four months after marrying his “soul mate” and long-term partner Glenda.
“The doctors tried to ensure he had the best quality of life for as long as possible. The day we got married was a bitter sweet occasion; you marry someone for life and I now realise we should have done it years ago. We had been together for a long time and kept putting it off, saying next year ...”
Ian was only 41 years old when he passed away, just three months after learning he had an aggressive glioblastoma multiforme (GBM4). His passion for riding and specifically the sport of eventing, led his widow, Kathryn, to establish the Ian White Memorial Trophy. This is presented each August during the Smith’s Lawn horse trials in Windsor Great Park to the best amateur event rider.
“Ian was then transferred to the John Radcliffe in Oxford where he underwent a biopsy – we had already been told that he wouldn’t have surgery because of the position of the tumour. Until this point we clung on to thinking that there would be some hope, but when we were given the results of the biopsy, that Ian had a high- grade glioblastoma multiforme (GBM4), we both knew this was it. We saw the consultant together. He was quite clear that Ian couldn’t be cured…”