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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.


Anon

You are forever in our hearts.

Recently published stories

Martin Evans

Originally from Lordswood in Southampton, 69-year-old Martin Evans moved to Romsey in 2017 to be closer to his brother, Gary. Before the move, Martin had been living on his own in the home he shared with his mother, until she died in 2014. In 2019, the talented musician, who lived with autism, discovered he had a grade 4 glioblastoma multiforme (GBM) after his “unusual behaviour” saw him admitted to hospital and a scan showed a lesion on his brain. Despite an operation to remove the tumour and radiotherapy treatment, the cancer was too aggressive and nine months after he was diagnosed, Martin died on 23 June 2020. Now, his brother and bandmates are working with Brain Tumour Research to raise awareness and fundraise to help find a cure for the deadly disease.

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Surinder Shergill

Mum-of-three and grandmother-of-seven Surinder Shergill, of Erith in South East London, was diagnosed with a glioblastoma multiforme (GBM) in July 2018. Her symptoms were attributed to grief following the death of her much-loved brother months earlier but included vacant spells and weakness in her legs. By the time her tumour was discovered, she was given a prognosis of just eight weeks. She died at home, surrounded by family, in September 2018, one night after celebrating her 71st birthday.

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Callum Elliott

Oxfordshire toddler, Callum Elliott was just 20 months when he was diagnosed with an anaplastic ependymoma after a family member noticed a constant tilt of his head. After initially being given medication for wry neck, concerned mum, Zoe Elliott, re-visited the doctors and was referred to the John Radcliffe Hospital where further tests revealed the devastating news of a tumour on Callum’s brain. He had three operations, encountering complications during his diagnosis including a tracheostomy, and recovering from meningitis, staphylococcus aureus and sepsis. After undergoing only five out of 35 rounds of gruelling chemotherapy, and radiotherapy treatment, Callum’s tumour became too aggressive and he died on 9 January 2017, aged four, in a hospice with Zoe by his side

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All stories

Eddy Kirby

Within 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

Edie Jackson

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.

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Edward Morrison

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’.”
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Elaine Neesam-Smith

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.”

 

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Ellie Savage

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.

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Emma Halstead

My 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’.”
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Emma Selby

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.

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Eva Giles

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.”

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Eva Williams

We are grateful to Eva and her dad Paul, who worked with us in April 2020 to share her story here. Sadly, Eva passed away on 8th January 2021. We remember Eva 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.

Nine-year-old Eva Williams, from Wrexham, was diagnosed with a high-grade diffuse intrinsic pontine glioma (DIPG) in January 2020. The survival prognosis for this type of brain tumour – the deadliest type of childhood cancer – is eight to 12 months. She has undergone radiotherapy and her family has been told there is no further treatment available on the NHS. Desperate to help their daughter, Eva’s parents Paul and Carran are crowdfunding to raise the £250,000 needed for private treatment in the US.

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Evie Evans

First-time parents Kelly and Marc Evans were overjoyed at the safe arrive of their beautiful baby daughter Evie on 9th March 2007. Their first sense that anything was wrong came when she was 18 months old. Eleven months later, after being examined in connection for repeated vomiting, a CT scan revealed a mass in Evie’s brain. She was diagnosed with an extremely rare Atypical Teratoid Rhabdoid Tumour (AT/RT), most prevalent in the under-three’s. She endured surgery and treatment but passed away, with her parents at her side, on 4th November 2009. She was just two-and-a-half.

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