Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Recently published stories
Lily, from Eastwood near Southend in Essex, was just 13 when she was diagnosed with diffuse intrinsic pontine glioma (DIPG). Her family, which includes her parents Diane and Martin and her younger brother Josh, were told that the tumour was inoperable and the only treatment available was radiotherapy to give her a few extra months until the tumour began to grow again. They were told to go home and make memories. The Wythes have since found a promising clinical trial in the United States and are hoping to raise the hundreds of thousands needed to secure what could be life-saving treatment.Read more
Lyra was just five months old when she underwent emergency surgery to remove her tumour, a low-grade choroid plexus papilloma. Initially misdiagnosed as a virus, her symptoms had included a loss of appetite and vomiting. Now six, Lyra has released a cover of Christmas classic When A Child is Born, with funds being donated to the charity Brain Tumour Research.Read more
Laura was just 21 when she was diagnosed with a low-grade brain tumour. The swimming instructor and keen horse rider had suffered from debilitating symptoms for more than two years, including migraines, sickness, and psychosis, which were misdiagnosed as a mental illness. A year on from her diagnosis, she is still adjusting to life as a brain tumour patient. She’s at a crossroads as she decides whether to have further treatment. Her plans of moving into her own home and thinking about a family have been thrown into the air.Read more
Two-year-old Finlay was finally diagnosed with a high-grade brain tumour after his mother repeatedly pestered health professionals saying she knew something was wrong with her son. He underwent surgery and is currently on chemotherapy. Finlay is doing well and his parents are trying to stay positive although they have been told that just 20% of patients survive beyond five years.
“I need to stay positive for Finlay, he is not a statistic, he is my son. Finlay is the most loving little boy and a true inspiration to us and everyone who meets him. He is our little soldier and continues to amaze us every day with his bravery and strength. It’s easy to sit back and think something like this won’t happen to you but it does, I am living proof of that, it has happened to our little boy. For this reason we all really do need to raise more funds and awareness to help fund the fight against brain tumours for all those amazing people, like Finlay, who are fighting. Hopefully, one day we will find a cure.”Read more
Flora had just started studying for A-levels when she began to experience strange feelings of nausea, hot flushes and partial seizures. She was finally diagnosed with a low-grade brain tumour in February 2016 and underwent surgery because of worsening epilepsy. Despite suffering from post-operative depression, she gained a university place to study chemical engineering. Now, two years since her surgery, she feels extremely lucky and is determined to change misconceptions about brain tumours amongst her peers.
“Looking back at my experience, I often realise how lucky I am. I’m fortunate that it all went well and I’m living more or less normally. The situation forced me to grow up and mature more quickly and I now understand the value of life. I can see how fragile and unpredictable it can be and I’m definitely more positive. Small issues that used to get to me don’t really matter now in the grand scheme of things.”Read more
In August 2016, Wenna and Franco Pietrantonio were getting over a turbulent year. After the premature birth of their twin girls, who were in and out of hospital for their first year with various health complications, they faced another battle. In October, Franco was diagnosed with a large, presumed low-grade glioma after suffering a seizure in August. The father-of-three endured brain surgery to remove his tumour just a few days before Christmas which, thankfully, has since shown no re-growth. Now he requires yearly MRI scans and he and Wenna live with a new sense of vulnerability, knowing full well that life can turn upside down in an instant.
“Over the phone, the consultant said that Franco had a large tumour, presumed to be a low-grade glioma. To us, this was of little significance; we didn’t understand the diagnosis but instantly thought it would kill him. The diagnosis was a complete bombshell and it was awful. We tried to be strong and put on a brave face but personally, I felt very alone. Suddenly, I was on my own, looking after my family, and it was up to me to keep it together.”Read more
Francoise SheltonFrancoise was 47 when she was diagnosed with a brain tumour. She and her family had noticed some big personality changes prior to her falling unconscious. Francoise owes her recovery to the care and support she received from her children who were 20, 18 and 15 years old at the time. Read more
Freyja Hanstein was enveloped by grief after losing her husband to abdominal cancer just a month after they were married. Within a year she was fighting her own battle with the disease and underwent surgery to remove a brain tumour. She has now developed the app WholesomeWorld bringing together scientific and lifestyle information designed for patients and those supporting them through treatment.Read more
Gary RobinsonFather-of-two Gary Robinson marked his 34th birthday in May 2015 by running the Manchester 10K to raise money for Brain Tumour Research. It was the first such event he had taken part in and it came just months after he underwent surgery and radiotherapy to remove an extremely rare and aggressive grade II haemangiopericytoma brain tumour. Read more
Gemma GliddonMother-of-two Gemma Gliddon is awaiting surgery for a schwannoma brain tumour which has regrown after a previous operation. Determined to remain positive, Gemma, 32, is training to become a nurse and is helping to raise awareness and funds for research by taking part Wear A Hat Day 2015 just four days after her latest operation. Read more
For first-time parents Stephanie Day and James Devlin, it was devastating to be told their new-born baby George had a brain tumour. ‘Gorgeous George’ underwent a nine-hour craniotomy when he was just 10 weeks old and is now a healthy and happy little boy. His mum Stephanie, 27, who was shocked that someone so young could be diagnosed with such a serious condition, is keen to raise awareness of the disease.Read more
Gordon was diagnosed with a brain tumour at the age of 32, after first being told he had probably a stroke and then possibly he was HIV positive. He started writing comics to help his friends and family understand cancer and as something cathartic for himself, but is now publishing them, as well as exhibiting the comics to a wider audience. He feels happy and settled, but his seizures are a constant reminder that his life is very uncertain.
“Having a brain tumour has changed the way I live my life. When I am in my happy head, I often think I might not see too many more of these times, so I try to recognise good moments when I am in them and thank people who are there sharing them with me. Compared with so many people I feel very lucky that I got away with it so lightly. I have had no long-term effects from my treatment apart from hair loss, but I have my beard as compensation for that!”Read more