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
Alan NeedhamAlan was born and bred in Doncaster and worked for the civil service for over 30 years. He was very proud of his two sons, Darren and Andrew, and his three grand-daughters. Never having been a drinker or a smoker, Alan enjoyed making music most of his life. He learnt to play the euphonium as a very young boy and has played in numerous brass bands within South Yorkshire and Lincolnshire since the age of eight, as well as becoming a musical director and conductor. Alan met his partner, Sarah, and moved to Scunthorpe in 2013, a year before he was diagnosed with a GBM4 and given just months to live.
“Alan had a CT scan and could see for himself there was a big white lump in his brain. He got his piece of paper again and wrote, “I can see that big white lump. I know I haven’t had a stroke.” Read more
Alexander Paul from South London was 18 when he addressed the 2014 Conservative Party Conference and described his experience of policing policy. At the Conservative Party Conference in 2017 Theresa May informed her party that Alexander had died earlier that year from a brain tumour. Joanna Brown tells the devastating story of her son’s illness, the awful impact on her and the loss to society of a gifted individual who had so much to give.
“It is this sense of crushing loss, this waste of potential, that haunt my days. He did so much but could have done so much more. I did everything I could but I couldn’t save my son and our tragedy is a wider tragedy as society needs people like my son, Alexander.
I am angry and full of what ifs but we have his poetry, his humanity and his spirit as his legacy. We didn’t discuss his mortality, he didn’t leave us letters but he left us his prose and that comforts me. A book of his work was published a year on from his death and he would have been proud of that.”Read more
Our Fundraising Group, Alexandra’s Angels, is inspired by the story of Alexandra Foulis who died at the age of 24. Known to loved ones as Ally, she was a fun, outgoing and confident young woman whose life ended far too soon. She underwent surgery, radiotherapy and chemotherapy to halt a grade 3 astrocytoma but Ally passed away in August 2011. Through Alexandra’s Angels, her sisters Melissa and Rebecca are keeping Ally’s memory alive and funding the fight against brain tumours in her name.
“Not only had the tumour returned but it was back larger than before, now measuring 7cm. What’s worse, it was inoperable because it was too close to the nerves that controlled her breathing and heart-rate. We were all devastated to learn the tumour was now terminal. Ally being Ally, tried to lift the mood, saying: ‘Well, it ain’t over till the fat lady sings, and I ain’t singing yet!’”Read more
Alison PhelanThe year 2000 approached - a new millennium and a new beginning. New years always made me sad, looking back at our happy life wondering what was ahead.
In May I became unsettled but didn’t know why, when my life was so complete. Then I became aware that Alison had developed a subtle incomplete movement in her eye that only a mother would notice. I took her to the doctor who referred me to an optician who said it was common and would correct itself.
Gary and I would talk and talk about it. I knew something was wrong. I went back to the doctor then to another optician. “Please someone listen to me”. I started to make Gary nervous. He knew I knew the children so well.
I went to a third optician - Gary was on a school trip with one of the boys but I went on the spur of the moment. I hated this feeling in my stomach telling me to act and act now!
They did test after test, and then told me to go to A&E with a letter that something was making the muscles in her eye deteriorate. Gary was only 5 minutes away; we dropped the boys off and went to the hospital. They said they couldn’t see anything but told us to go to a leading eye hospital the next day.
Amita CharavdaAlong with her husband Mahendra, Amita had owned a shop called “Lucky Jewellers” on Belgrave Road – Leicester’s Golden Mile for nearly 40 years. She was looking forward to enjoying retirement and having more leisure time to spend with family and enjoy lovely holidays. Tragically, she passed away from a brain tumour, aged 55, just three months after diagnosis.
Here is Amita’s story as told by her daughter, Sneha…
“The speed in which we lost Mum was so shocking. I couldn’t believe that in this day and age Mum could have something which was incurable.”
We are grateful to Amy who worked with us in May 2017 to share their story here. Sadly, she passed away in 2019. We remember Amy 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.
Determined mum Amy Quin will mark the first anniversary of her brain tumour diagnosis by skydiving 15,000ft from a plane with her sisters. The trio are raising money for the charity Brain Tumour Research. With a prognosis of five to seven years, Amy is hopeful that research will help to identify new treatments which would mean her tumour is operable giving her precious time with her family including partner Lewis and their four-year-old son Hector.
Andrea ThursfieldAndrea passed away just nine months after being diagnosed with a grade 4 glioblastoma multiforme (GBM) brain tumour. She was 46. The mother of a teenager and much-loved partner of Nick Butler, she underwent surgery, chemo- and radiotherapy but could not be saved. She and Nick had a short-lived romance as teenagers and then met again by chance 21 years later.
Nick tells Andrea’s story …
I first met Andrea when I was 19. We went out a couple of times but then I went away to work and we lost touch. More than two decades had gone by and we had both had our 40th birthdays by the time we met again by chance in July 2005. We bumped into each other in a pub. I had always hoped that somehow, somewhere, I would see her again but had no idea what she was doing or where she was. It turns out that, unknowingly, we lived very close to each other in Perton, Wolverhampton. She tottered over on her heels and we chatted, it ended up with her inviting me round for a cup of tea and she said: “Don’t cock it up this time!” It seems we both held a candle for each other after all that time. She had a young son, Ryan, from a previous relationship but neither of us had married. Things moved on and we each sold our houses in order to buy a property together to make a home for us and Ryan.
Andrew Atkinson-Whitton loved life. In his 37 years, he touched so many lives with his infectious smile and happy-go lucky nature. Andrew kept smiling even when he was diagnosed with a grade 4 glioblastoma multiforme (GBM) and had to undergo intensive surgery and treatment but the tumour was too aggressive. He died 20 July 2018, just 14 months after diagnosis, leaving his husband Carl, mum Jill and brother Robert.Read more
In just 18 months, Andy Graham’s life had changed beyond recognition. The 52-year-old was diagnosed with a low-grade haemangioblastoma and, despite surgery and treatment, he suffered unimaginable trauma and distress as the tumour continued to grow. Leaving behind his wife and two sons, Andy sadly passed away on New Year’s Eve 2017.
“When the operation finally went ahead in August, Andy’s ordeal didn’t stop there. He was in theatre for 11 hours and I received a call from the surgeon saying ‘if I carry on I’m going to kill him.’ They had only touched the tumour and so much blood flowed that they spent hours mopping it up. Andy had psyched himself up for this surgery for so long and it had been a disaster.”Read more
Andy Watts was 54 and living in Ipswich, Suffolk, when he was diagnosed with a glioblastoma multiforme (GBM) following surgery which included signing up to take part in a trial of 5-ALA, the “pink drink”. A positive and upbeat person, Andy tried to jolly his family along with jokes. Although his loved ones knew his tumour was incurable and terminal, nothing could prepare them for the fact they lost him just over five months later.Read more