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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.


Anon

You are forever in our hearts.

Recently published stories

Isabella Ortiz

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.

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Helen Legh

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?” 

 
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Helen Legh

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.

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All stories

Colin Shaw


Passionate flat-green bowler Colin Shaw was 69 years old and 11 years into his retirement when he collapsed unexpectedly.  Initially thinking it was a reaction to malaria tablets taken in preparation for a forthcoming holiday, he and his wife were shocked to learn that he had an aggressive grade 4 glioblastoma multiforme (GBM) brain tumour.

With a second tumour discovered nine months later, Colin lost his fight only 18 months after the first diagnosis, with his family all around him.

“If there is such a thing as a perfect death, Colin had it.  We were all there, me and our three daughters, when he quietly slipped away.”

 
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Collette Drifte

Freelance writer and loving wife Collette had plans for a blissful retirement with her husband of 29 years, Reinhard. However, after being diagnosed with a glioblastoma multiforme in August 2016, her dreams of travelling and relaxing were tragically cut short. She faced her illness with optimism and courage, bringing laughter to all those around her, until she sadly passed away at the age of 65 with her husband at her bedside.

I could see that she was drifting away from us and, as she slipped into a coma, the feeling of powerlessness was overwhelming. I had done all I could to help her. I was woken up by the night nurse who told me Collette was about to die. I’m grateful that this allowed me to be with my wonderful wife for one last time.

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Danny Green

The Danny Green Fund was set up when his parents lost their gorgeous son Danny at the age of 11. Before he was diagnosed with a brain tumour, their beautiful, fun loving and energetic son was a typical 10-year-old in every way, very much living for the moment and enjoying life. Tragically, Danny died just nine months after diagnosis, leaving a void which will never be filled.

“Our hearts are broken and can never be repaired. To lose a child is unbearable and should not happen. Danny is the inspiration for our charity: to raise funds to help children with Posterior Fossa Syndrome, which was Danny’s main battle on a daily basis, to fund research to help find a cure, as well as to raise awareness of this devastating disease to hopefully prevent other children from suffering as Danny did...”

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Danny Horton

My brother, Danny, was a healthy, sporty, fun-loving young man but in 2010 he passed away, aged 36, with an astrocytoma brain tumour.  Just six months later in the same year, my wife, Maddie, lost her father to the same cruel disease.

“Danny passed away nine years after his diagnosis, aged 36
 – yet another tragic example of the stark fact that more children and adults under the age of 40 die of a brain tumour than from any other cancer.  He walked his brain tumour path on his own, living with a gun to his head.  
It makes me think all the more of him.”

 
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Darel Bryan

Darel was 33 years old and in the prime of his life when he was diagnosed with glioblastoma multiforme (GBM) in December 2014. Previously extremely healthy and active, it was a complete shock and devastating to his family and his beloved partner of 12 years, Natalie. Darel bravely fought this aggressive disease for 15 months, but sadly lost his battle on 26th February 2016.

“The clinical nurse specialists at the meeting told us not to look his diagnosis up… I was to discover that GBM is a monster; it is relentless and an utterly cruel disease. It not only robs you of who you are, it robbed Darel and me of our future together.”
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Daryl Owens

Daryl Owens was diagnosed with a grade 3 astrocytoma when he was 34 years old. He always stayed positive, approaching everything with a sense of humour, and his condition at one point stabilised. After two years however, Daryl began to deteriorate and in October 2018, three years since his diagnosis, he passed away with his wife Jude and his parents by his side.

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Dave Holden

We are grateful to Dave who worked with us in September 2015 to share his story here. Sadly, he passed away in February 2019. We remember Dave 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.

Father-of-three Dave Holden is living with a grade 3 astrocytoma brain tumour. It was diagnosed in 2010 after he began to experience difficulty driving. The tumour responded well to 18 months of chemotherapy and radiation but a scan in March 2015 revealed it had returned. Dave continues to work full-time and remains positive about the future.

“I can’t be bothered with the doom and gloom. I have always been quite a positive person and now it is more important than ever. I do have days where I can feel down, but my wife gives me a kick to help me get over it. We have the kids to think about and I need to be here and on good form for as long as I can in order to look after my family.”

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Dave O'Donoghue

Husband, father, and grandfather, Dave O'Donoghue, was 59 when he was diagnosed with a grade four glioblastoma multiforme brain tumour, after suffering from severe headaches. Though he underwent surgery and radiotherapy, Dave sadly passed away less than four months after diagnosis, missing his milestone 60th birthday by a matter of weeks. This year marks 10 years since his passing.

“After what seemed like hours waiting in silence for the consultant to arrive, he came in and did not delay giving the diagnosis. Dad had a grade four glioblastoma multiforme (GBM), a very aggressive tumour and it was going to end his life within the next three months. We all sat there in shock at the news we had just heard, trying to piece it all together. My mum fled the room in tears while I just sat there in silence with my dad. His only question was if he would make his 60th birthday on the 13th July. The consultant paused, shook his head and said ‘I’m so sorry’.”

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David Flockhart

Professor of Medicine, Genetics and Pharmacology and Director of the Institute of Personalised Medicine at Indiana University in the USA, David Flockhart devoted his career to pioneering breakthroughs against cancer. 

Having lost his mother and cousin to glioblastoma multiforme (GBM) tumours, it was unfortunate when David found himself battling a GBM, a cancer where he felt that conventional treatment had not changed in 50 years.  Knowing that his prognosis was poor, David wanted to communicate his medical knowledge widely, and through his broadcasting work, let others understand what it was like to live with the devastating effects of a brain tumour before he died.

“My brother was convinced that there had to be a genetic link, or at least a predisposition, to brain tumours in our family.  Three of them, all in my mother’s blood line, diagnosed with GBM.”
 
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David Grant

We are grateful to David who worked with us in October 2013 to share his story here. Sadly, he passed away. We remember David 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.

David Grant was diagnosed with a glioblastoma multiforme grade IV brain tumour in August 2005. He was working as a Senior Project Manager for the Royal Bank of Scotland and married with a two-year-old daughter at the time. David was told he could have just 12 months to live. Fast forward to today: David hasn’t received cancer medication since 2006 and is now watching his daughter growing up.
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