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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

Graham Addison

Graham Addison was a larger-than-life character at the heart of a tight-knit family. His brain tumour diagnosis in 2015 was a terrible blow to his wife, five children and nine grandchildren, but the family remained positive as Graham responded well to surgery, radiotherapy and chemotherapy. However, after a second operation Graham deteriorated rapidly and the love and support of his family couldn’t halt the aggressive glioblastoma multiforme (GBM). He passed way in September 2016, aged 66.

“Dad came out of theatre a different man and, for the first time, he was noticeably in decline. He couldn’t remember his own date of birth or even what day of the week it was. He was so brave but I remember once seeing the fear in his eyes when it dawned on him that his brain was failing him. How scary it must have been for him – to go from such a bright and intelligent man to someone who could no long remember how to use his mobile phone.”

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Guy Farthing

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.”
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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?” 

 
Read more

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.

Read more

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.”

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Holly Timbrell


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.

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.
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Hugh Walker

Hugh 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.”
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Ian Davies

Ian 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

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.”

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Ian Meek

In 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.

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