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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

Ian Walsh

Former 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 ...”
 
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Ian White

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…”

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Ieuan Jones

Based in Dubai with his wife, Kelly, and a successful trainer for Emirates airline, Ieuan displayed very uncommon symptoms ahead of the discovery of his tumour.

With the devastating news that he had an aggressive GBM, Ieuan and his family relocated back to Wales, and he lost his fight less than two years later.

“That Christmas, I bought Ieu a star.  We named it “Daddy’s Star” and we told Sienna that when he was no longer around, she could look up in the sky and the brightest star would be the one he was sitting on.”
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Isabella Coomber

Diagnosed with a brain tumour at just 14 months, Isabella defied the odds to outlive her prognosis before she passed away aged five, at home in her mother’s arms, with her three doting sisters kissing her goodbye. Despite her illness, Isabella remained a happy child who loved to sing and dance, to play with her dolls and feel the wind in her hair. She went to school whenever she could and is much missed by so many.

“It was very touching that, as the funeral procession passed school, the teachers were standing by the fence and her classmates were in the playground, calling out ‘Here’s Isabella’ and waving. I don’t feel angry about what happened but I do feel a great sense of sadness that Isabella didn’t get the chance to grow up. I will be forever grateful for the doctor’s honesty which allowed me to accept that, sometimes you have to settle for quality of life rather than quantity, and this allowed me to ensure we gave her the best life possible.”

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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.

Read more

Jack D'Lima

Jack was only a toddler when he was diagnosed with a brain tumour but, despite battling for his life for more than eight years, he lost the fight.  His parents feel consumed and suffocated by the emptiness they are left with, but they have to pick up the shattered pieces and rebuild their lives for the sake of their other two sons. Read more

Jacob James-Pryce

Baby Jacob was born on 29th November 2014, a second child for Julie and Andy and a beloved brother to Jessica who was just two. Initially diagnosed with a respiratory infection, Jacob’s condition deteriorated and he was admitted to hospital where an aggressive glioblastoma brain tumour was discovered. He underwent surgery but died two days later. He was just three months old.                                                                                   

“To lose a child is the worst possible thing and I wouldn’t wish it on anyone. We talk about Jacob every day, Jessica says good morning and goodnight to him and chats about him as she rides her bike, imagining he would be doing the same thing. We knew nothing about brain tumours before this happened. Now they are a part of our lives. It doesn’t make sense to think that brain tumours kill more children and adults under 40 than any other cancer yet just 1% of the national spend on cancer research is allocated to this devastating disease. Jacob had his whole life ahead of him. If anything good is to come out of this it will be that more money will be invested in research.”
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James Campling

Inspirational friend, son and hero Corporal James Campling was diagnosed with a brain tumour in June 2016. Despite this diagnosis, James, along with family, friends and comrades, was able to raise over £30,000 for Brain Tumour Research.

This continued James’ life-long devotion to those in need, whether through his career as a Royal Air Force Aeromedical Evacuation Specialist or his charitable work for a range of good causes, from educating children in Malawi to fundraising for The Blue Cross.

James passed away on 10th April 2018 and was honoured with a military funeral.

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James Manning

James just wanted to carry on as normal after he was diagnosed with a brain tumour. He endured surgery, chemotherapy and radiotherapy, but still managed to make his 4am shifts at work, providing for his wife Samantha and their two young children. James saw his favourite band Guns N’ Roses just a short time after leaving hospital in 2017.  He suffered dreadful personality changes at the hands of his tumour together with memory and speech difficulties.  He will always be remembered as a gentle giant and a loving dad. 

“The doctors reassured us that James’ tumour wasn’t aggressive, and there was no immediate rush to operate, but deep down I feared that it would never be cured and we could one day lose him. I was angry at myself for not recognising the signs. The headaches, sickness, the personality changes; all that time we never imagined that James had a brain tumour.”

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Jane Packer

Jane Packer was busy revolutionising the world of floristry and raising a family when she was diagnosed with an aggressive brain tumour that turned out to be a glioblastoma grade 4. Following gruelling treatment, Jane was able to return to work and live a normal life until a stroke six years later heralded the return of the tumour. After she passed away in 2011, her husband, Gary Wallis, set up the Jane Packer Foundation in her memory.     

“During the years of her illness, we busily researched the treatment options available and were shocked to find out that brain tumour research was so seriously underfunded in the UK.”

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