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
Angus AnthonyIn 2008, Angus was working as a police officer at Scotland Yard. He walked into a post at the railway station and afterwards had a severe headache which progressively got worse. We suspected a haematoma and were referred for a scan at our local hospital. In fact, the news was much worse – it revealed that Angus had a brain tumour. Angus was only 41, a husband and father of two young children.
Since the initial diagnosis, we also had to come to terms with the fact that Angus had a very rare and very aggressive cerebral lymphoma brain tumour. There are only about seven cases across the UK and 30-35 in the whole of Europe. Almost nothing is known about cerebral lymphomas because they are so rare - so there has been no research into how to treat them. Angus was offered drugs which had not been previously tested.
Anna Olivia HughesAnna was diagnosed with a brain tumour in February 2005 and following a 7-hour operation to remove it she underwent an intensive chemotherapy programme at Addenbrooke's Hospital in Cambridge. For 15 months she spent every other week in hospital but sadly, like the majority of children diagnosed with brain tumours, Anna lost her battle and passed away aged 3 years 8 months.
Diagnosed with a brain tumour at the age of 23, Anna Swabey was intitally given just months to live. Under the care of neurosurgeon Kevin O’Neill, who leads the Brain Tumour Research Centre of Excellence at Imperial College, London, Anna had surgery and treatment. She also got engaged and shared her experiences through her blog Inside My Head. Anna passed away on 16th September 2016, the day before she was due to marry.
“I am fortunate in that I don’t feel my illness dictates my life and while I am most definitely the same person, I even feel as if I am a better person for it. I know this may sound odd but my diagnosis has made me view my life differently and the way I am choosing to live now leaves me feeling fulfilled. I love knowing that I can make a difference, and, potentially help others.”
Annie HughesAnnie had severe speech and language difficulties which meant that she had to attend special schools from the age of six. Despite her problems, Annie was a ray of sunshine and made friends wherever she went. On leaving school she found herself a job, met her future husband and started a family. After all the early adversities, it seemed that Annie’s life was to have a fairy tale ending…
“As a family, we are all united in a desire for Annie’s legacy to be that fair amounts of funding are dedicated to research into brain tumours. We want there to be hope, not despair, for other people who learn that a member of their family has been diagnosed with this devastating disease.”
Arthur BoydArthur was a fit and healthy man and a loving husband and father to his three sons. He had a strong Christian faith which was a huge source of comfort and strength not only to him, but his whole family when he was diagnosed with a brain tumour just before Christmas 2015. He died just short of six months later, aged 69.
“I was aware of brain tumours, but had never equated them to brain cancer until Dad was diagnosed. I spent an inordinate amount of time researching treatments such as electric therapy in Germany, as well as immunotherapy trials, but it was soul-destroying not to be able to find anything available to Dad no matter how hard or far we looked.”
Ashley ShameliAshley Shameli was 22 and training to be a solicitor when he was diagnosed with a grade two astrocytoma brain tumour after suffering a massive epileptic seizure. He underwent several operations with the pioneering brain surgeon Henry Marsh and endured gruelling chemotherapy and radiotherapy. He lived for another eight years and died aged 30, leaving his beloved mum Jeanette, his dad, his older sister Shardi and younger brother Shervin.
“When Ashley was born I was six-and-a-half. I remember being so proud to be the big sister of such a beautiful, happy little boy. My other brother, Shervin, was born a year and half later. The three of us were exceptionally close as children and lived together when we moved to London. I will never forget Ashley’s beautiful smile, his cheeky dimple, his twinkling eyes and his kindness. He adored his family and we adored him.”
Aurora ProvenzanoAurora was just six years old with her whole life ahead of her when she was diagnosed with a brain tumour. She fought a brave battle for three and a half years, but sadly lost the fight, leaving her parents and two sisters, Isabella and Chiara with a huge hole in their family.
Aurora only ever had one fit and that was it - she was otherwise completely healthy. Yet in 2006 we found ourselves at our local hospital where an MRI scan revealed Aurora had a brain tumour. When Aurora was diagnosed it felt like I was having an out of body experience. I was pregnant with my third daughter and it seemed like I was looking down at myself, not knowing what to think.
Barry Albin-Dyer OBE
When respected Bermondsey undertaker and family man, Barry Albin-Dyer OBE, started seeing zig zags in front of his eyes, he could not have guessed that a scan would reveal a very aggressive brain tumour near his optical nerve. Determined to survive and be a “Bermondsey boy for years to come”, he underwent gruelling treatments, documented his battle in his blog, and sadly died less than two years later.
“Barry, being Barry, was determined to keep going in to work every day he could. “I’ve got to keep on going,” he would declare, “or I’m a dead man.” Barry had a strong will and a strong Catholic faith, and two those things helped him get through it. He never wanted the cancer to take him over and stop him doing the things he loved. I’ve always thought that was what kept him alive for as long as he was.”Read more
Becky had been suffering with increasingly bad headaches and then vomiting for about 3 months and it was starting to get worse. The doctors missed the signs and failed to diagnose a brain tumour, but I don’t blame them. The outcome would have been the same.
Eventually in May 2009 she collapsed and was taken to hospital where a scan indicated a brain tumour. We were given the official diagnosis on Becky’s 39th birthday – 28th May. She had a glioblastoma multiforme with a prognosis of 12 to 14 months. The neuro-surgeon was unable to get the entire tumour out and said that it was the most aggressive one he had ever seen
Becky was just 23 when she was diagnosed with a grade four glioblastoma multiforme (GBM) brain tumour and told she had a year to live. She outlived the prognosis, surviving for nine years, and despite being told her extensive treatment would leave her infertile, gave birth to a “miracle” daughter who was seven when she lost her mum in June 2017.
“Although there was no change in Becky’s tumour for six years its presence was always there, casting a shadow, and it was as if we lived on a knife-edge as we waited anxiously from one scan appointment to the next. Becky was really positive where I was more realistic and ensured her daughter Phoebe was prepared from the beginning for what was likely to happen. Phoebe had always known she was going to lose her mum and we are now her Moma and Popa. She is a delightful child, so much like Becky and it is hard not to cry as she catches me unawares by saying things like how much she misses her mum’s warm hands and I know exactly what she means.”Read more