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
Andrew Mackie from Dinnet in Aberdeenshire, was a fun-loving 44-year-old who loved motorbikes. When he started having seizures in August 1999, his GP thought he may have epilepsy but six months later, when his eyesight started to deteriorate, he had a scan which revealed he had a high-grade astrocytoma brain tumour. The lorry driver and father of two girls underwent radiotherapy, surgery and palliative chemotherapy. He died at home on 21 February 2003, with his adoring family by his side.Read more
Briar Butler from Kendal in Cumbria, was just 30 when, in June 2018, she received the devastating news that she had an incurable brain tumour. Her diagnosis came after years of suffering from debilitating mental health problems. Briar, a trainee accountant and keen pole dancer, underwent surgery to debulk the tumour and several more operations after she developed infections in her skull. The mum-of-one spent the final few months of her life in a care home, which meant she was unable to see her loved ones when restrictions were imposed during the COVID-19 pandemic. Briar died on 17 August 2021, leaving her four sisters, her mum Beverley and her six-year-old Noah devastated.Read more
Donna OsbourneDonna was healthy, apart from problems with high blood pressure which she probably inherited from her mother’s side of the family. She had been going to see the GP about it, who thought it might be a thyroid problem.
On New Year’s Eve, 2007, we were with friends and Donna felt faint and dizzy, although she didn’t actually faint. We sat her down and did all the things you do when someone feels faint. There was even a lady on hand at the party who used to be a nurse. We then decided to go home as Donna continued not feeling too good. She woke up fine the next morning.
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.”
Elizabeth PerkinsA mum of three daughters and a busy PA for Croydon Council, Elizabeth’s symptoms were initially thought to be nothing more than sinusitis, but sadly turned out to be an aggressive and incurable brain tumour.
Despite two surgeries, chemotherapy, radiotherapy and a drug trial, Elizabeth lost her fight with the tumour two years later, her immune system unable to fight off a chest infection and sickness bug caught during her final round of chemo.
“The tumour changed her into a completely different person. The fierce, feisty woman that had brought me up was slowly turning into a passive pussy cat.”
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