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
Essex mum-of-two Jenny Cooper-Radley was diagnosed with a grade 2 meningioma following a trip to Boots Opticians in Chelmsford in October 2011. Her doctor, whom she had visited around five times in two months, had attributed her ‘feeling a bit hungover’ to possible vertigo, Meniere’s disease or benign paroxysmal positional vertigo (BPPV) and prescribed medication. It was only when the former nursery nurse began experiencing pain in her eyes that she made the opticians appointment which led to the discovery of her tumour. She went on to have a craniotomy but continues to suffer with debilitating facial pains and in July 2020 was told she had developed a new tumour, which is being monitored with regular scans. Now, having recently completed a Couch to 5k, the 49-year-old is training to run the London Marathon.Read more
Father-of-two Stuart Edwards, from Devizes in Wiltshire, complained of ‘aching eyes’ two months prior to his shock diagnosis with a grade 4 glioblastoma multiforme (GBM) in April 2021.
After multiple surgeries, radiotherapy and chemotherapy, Stuart’s body began to grow weak from his treatment and his seizures returned. After an MRI scan confirmed the cancer had spread to his spine, Stuart received palliative care and he died aged 52 on 8 October 2021 in John Radcliffe Hospital in Oxford, with his loving family by his side.Read more
Albie Bayliss-Watts, from Didcot in Oxfordshire, was just two years old when, in November 2021, he died from an aggressive brain tumour he’d been fighting for less than a year. Albie’s death has left his two mums, Lauren and Hayley, completely heart-broken. Having dedicated the last year of their lives to caring for Albie through gruelling surgeries and chemotherapy, they are now trying to deal with their grief by raising awareness and fundraising in his name.Read more
Duncan ScottDuncan was an extremely intelligent, kind and thoughtful man. He was an avid fan of Formula 1 and Le Mans. In June 2015 he was diagnosed with a grade 4 glioblastoma multiforme. After an 18 month battle, he passed away aged 55. During the last weeks of his life he endured severe mental torture until he was admitted to a hospice where doctors and nurses were able to adjust his medication to prevent him from suffering anymore.
Here is Duncan’s story as told by his sister, Gayle:
“Duncan’s passing has left a huge hole in my life, as well as the many people whose lives he touched. His funeral was extremely well attended with many people voicing how he had “changed their lives for the better”. It seems so unfair that he was taken in his prime with so much joy to have and to give. I miss him dreadfully.” Read more
We are grateful to Duncan who worked with us in October 2019 to share his story here. Sadly, he passed away on 6th April 2021. We remember Duncan as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.
Kent-based radio producer Duncan Wallace, originally from Newcastle-upon-Tyne, is happily married with two young children, a great circle of friends and a successful and exciting career in the music industry. But life was turned upside down for Duncan in April 2019 when he was diagnosed with an inoperable, high-grade brain tumour. Having undergone a course of radiotherapy and chemotherapy, Duncan remains positive in spite of his prognosis and recently completed the Great North Run, raising an incredible £22,000 for Brain Tumour Research.Read more
Eddy KirbyWithin a fortnight of walking one of his two beloved daughters down the aisle on her wedding day, Eddy Kirby was suddenly taken ill and after tests he was diagnosed with an aggressive glioblastoma multiforme (GBM) brain tumour. It was inoperable and although he underwent treatment, Eddy’s condition deteriorated rapidly. He passed away, aged 64, on 7th March 2015, his late father’s birthday. In addition to leaving two daughters, Emma and Sarah, Eddy also left a partner Carol and his mother, Marjorie, aged 93. Read more
We are grateful to Edie and her dad Craig, who worked with us in December 2019 to share her story here. Sadly, Edie passed away on 26th January 2021. We remember Edie 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.
On 16 November 2019 Edie Jackson’s parents noticed her left eye had started turning inwards and she was developing a squint. Six-year-old Edie, from Waltham Abbey in Essex, also mentioned double vision, so her mum and dad booked an optician’s appointment for 20 November. Just days later, after an urgent referral to hospital, they were told the devastating news that Edie had an aggressive, inoperable brain tumour.Read more
At the age of 38, Edward Morrison was diagnosed with a low-grade ependymoma that appeared to pose little threat. After 10 months of treatment, there were no traces of tumour left and it seemed that Edward had beaten the disease. Sadly, the tumour made an aggressive return and, despite best efforts to treat it, Edward’s life was cruelly taken away from him in January 2018.
“Edward’s stubbornness was extremely frustrating at times, but his sense of humour provided some relief from the hopelessness of the situation. One day I asked him: ‘how are you feeling?’ and he replied: ‘not as bad as the guy who signed off my medical insurance’.” Read more
Elaine Neesam-Smith’s story reminds us just how devastating a brain tumour can be and how desperately a cure must be found. In October 2017, the 52-year old collapsed and was placed in an induced coma. Little did she know, a highly aggressive glioblastoma multiforme (GBM) was the cause. The tumour was inoperable and there were no treatment options. Sadly, the much-loved mum, grandma, wife and friend, died just six months later.
“Now it’s six months on and we’re taking each day as it comes. Kieran, Paul and I are plodding along and supporting each other through our grief. Memories of Mum are everywhere and sometimes it’s a comfort and sometimes it’s too much to bear. Ellie and Heidi miss their grandma so much and they call her their ‘star in the sky’. Mum was such a doting grandma and it breaks my heart that she won’t see them grow up.”
Ellie passed away aged 14 in 2002, just under a year after being diagnosed with a glioblastoma multiforme (GBM). Losing Ellie inspired her mum Wendy to set up a charity in her memory at a time when there were very few brain tumour charities. It was through losing Ellie that Wendy met Sue Farrington Smith, now chief executive of Brain Tumour Research, who was then a trustee of Ali’s Dream, having lost her niece to a brain tumour.Read more
Emma HalsteadMy stylish, creative, determined, positive, intelligent, adored, younger sister was diagnosed with a benign brain tumour in April 2012 when she was aged 19. She underwent a wide-awake craniotomy in November 2012. In July 2015 the tumour became malignant and aggressive and was diagnosed as a glioblastoma multiforme grade 4. Emma underwent chemo and radiotherapy, but nothing could save her. She was admitted to hospital in March 2016, just days after doing a sky dive for Brain Tumour Research. Several weeks later, there came a point when every time Emma moved she had a seizure. On 13th May 2016 she slipped peacefully away, aged just 23.
“Emma truly was an inspiration to us all. When she discovered she was ill, she adopted an attitude of: ‘I’ve got a tumour, but I’m still going to get on with life.’ This positive attitude was to stand her in good stead right up to the end. She was never afraid to ask tough questions and each time she received bad news she would quickly pick herself up and move on. One time she simply said: ‘Ok, pass me the grapes, let’s get on with it’.” Read more
We are grateful to Emma and her sister, Karen who worked with us in January 2021 to share her story here. Sadly, she passed away on 6th April 2021. We remember Emma 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.
Mum-of-one Emma Selby, from County Durham, has been diagnosed with three brain tumours. Her first diagnosis came in 2017, when doctors discovered an inoperable glioma on her brainstem. Emma had radiotherapy but sadly, in December 2019, she got the dreaded news that a second glioma had been found close to the first. She had further radiotherapy but devastatingly, a third tumour, this time an astrocytoma, was picked up following a scan in June 2020. She has since had chemotherapy and surgery. Emma’s family are fundraising to pay for private cancer treatment, as they say their options on the NHS are running out.Read more
The second of three children, Eva was just four years old when she was diagnosed with a diffuse intrinsic pontine glioma (DIPG), the most deadly of all childhood brain tumours for which there is no cure. Faced with the bleakest possible prognosis, her parents fought to find treatment which would offer her more time. Sadly Eva passed away within a year, her severely damaged body succumbing to pneumonia.
“We have been plunged into this nightmare world where hardly any money goes into DIPG and yet this hideous form of brain tumour kills up to 40 children every year in the UK alone – that’s two classrooms full of infant school-aged kids. Like our daughter, these children are normal and happy until one day they fall over. Gradually their bodies shut down while maintaining complete cognitive awareness. They are fully aware until their arms and legs stop working. They become locked-in, a prisoner in their own shells – can you imagine anything worse for a fidgety and energetic five year old? Their young, healthy organs keep them going for much longer than an adult’s until, finally, they stop functioning. Our DIPG kids die a truly horrible death, slowly over months. And, as parents, we watch every minute of it with desperation and helplessness. The reality of DIPG is a living nightmare.”Read more