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In Hope

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

Rosie Wilson

Just a couple of months after her wedding, Rosie, then a 31-year-old children’s nanny, was told she had an aggressive and incurable brain tumour. She was given a survival prognosis of 12 to 15 months, but puts her long-term survival with a glioblastoma multiforme down to taking part in some observational research of repurposed drugs at the private Care Oncology Clinic in London. Read more

Lynne Collins

Lynne Collins, 61, is undergoing her fifth round of chemotherapy to treat her glioblastoma multiforme (GBM) – the most aggressive form of brain cancer. She has already endured surgery and now faces the difficult decision of whether to undergo radiotherapy which could leave her blind. As a former advanced nurse practitioner, she is under no illusion of how uncertain her future is.

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Kirsty Barton

Just three weeks after starting her new job, Kirsty Barton, 28, was diagnosed with a brain tumour. The mum-of-two endured surgery in May 2019 which removed most of the tumour and now she is doing well. Kirsty’s diagnosis made her realise how precious life can be and she hopes that other patients will be inspired by her story.

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All stories

Julie Carter

When 24-year-old student Julie Carter went for a routine eye test she didn’t expect them to find anything wrong. However, tests revealed she had a low-grade brain tumour and would need an operation to help control it. Now 11 years on since her diagnosis, she is still living with the tumour but is determined not to let it affect her life.

“I thought I was going to come out of the opticians with a lovely new pair of glasses, but instead I was referred to the eye clinic at Leeds General Infirmary. Something had been found during my field vision test and I had to see a specialist. That day in 2006 my life took a different course.”

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Julie Harvey

Bristol mum of two, Julie Harvey, is living with a grade four Glioblastoma Multiforme (GBM), a very aggressive form of brain tumour. Though doctors have given her a 14 month prognosis, she is taking every opportunity to indulge her love of swimming and spend time with her friends and family. Having lost her sister in her 20s to a head injury sustained from a freak horse riding accident, Julie is determined to not waste precious time dwelling on her illness and has set herself the challenge of swimming two miles in open water around Brownsea Island, something she has always wanted to do. 

“Telling my friends and family about the brain tumour was awful, especially my mum and dad. Sitting them down to tell them they were going to lose another one of their children was heart-breaking. I want to enjoy my life and don’t want to be remembered for the cancer, but for being me.”

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Katie Milliken

Katie had only been at nursery for a few short weeks when she was diagnosed with a brain tumour. Within hours she was undergoing emergency surgery but the tumour, although low-grade, is buried deep within her brain making it inoperable. She has endured 18 months of chemotherapy and three months of specialist radiotherapy in America which proved unsuccessful. Once again she is back on chemo and no-one knows what the future may bring.

“Life is so precious and, for us, fragile. We try not to look too far ahead and cling onto the fact that, with research, every day presents the possibility of better treatment options for Katie in the future. It is vital that we have hope and that we live in the moment but I do find it so incredibly hard to do. One of the biggest changes we have had to make since Katie’s diagnosis is to live with uncertainty, it is awful because nobody can tell us what the future holds.”

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Katie Smith

Special needs teacher Katie Smith, 31, was struck down with debilitating headaches just weeks after returning from her honeymoon. After numerous visits to the doctor and hospital appointments, her symptoms were finally diagnosed as a brain tumour and Katie was given the agonising prognosis that she may not live to see her 40th birthday. Together with her mum who is battling Non-Hodgkin lymphoma, Katie has written a bucket list and has been able to cross off “publish a book” after winning a children’s writing competition launched by ITV’s Lorraine Kelly. Together with husband Luke, she is facing a dilemma over whether to go ahead with their plans to start a family.

“I feel we need something to live for but do I really want to bring a child into the world knowing that, potentially, it’s going to lose its mum at a young age? Or perhaps we should try to live our lives the way we would have done had we not known about the brain tumour. In order to protect the unborn child, you can’t have an MRI scan until you have passed the 12-week mark. The hormones of pregnancy could cause the tumour to grow and, if it came to it, would I choose myself over my baby? It is impossible to imagine, although I know what Luke would say. I had always imagined myself with three kids but now we will be lucky to have one. It is a very tough decision and one which we will make together.”
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Kelly Ann Alexander

Devoted to her husband and her horse, Kelly Ann was turned away from A&E when her brain tumour symptoms were dismissed as the effects of too much drink. Eventually diagnosed with a low-grade tumour, Kelly Ann has been through surgery and had part of her skull replaced when a serious infection threatened her life. Now 39, Kelly Ann knows that her tumour may return but for now, she is back in the saddle and making the most of each day.

“My latest scan in December 2016 showed there was no regrowth of the tumour. I live with the knowledge that my tumour could come back but I’m determined to make the best of every day and, with Kevin and my beloved horse, I know I can put on a brave face. My tumour was ‘low- grade’ so, in many ways, I have been lucky. Although I have been through a very traumatic experience and have been left with mild weakness on my left-hand side, many others fare far worse.”
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Kelly Lee

Kelly was newly-wed and just 29 when she was diagnosed with a tumour on her pituitary gland. It was successfully removed during surgery but she estimates it took a full three years for her to recover completely. Kelly’s sister, Olympic swimmer Katy Sexton MBE, was among family and friends who helped Kelly through her illness. Katy is now organising fundraising events for Brain Tumour Research through her swimming academy.

“Being diagnosed with a brain tumour has changed my life for the better. It has strengthened my marriage, increased my confidence and motivated me to start my own business.”
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Kerri Parker

Kerri Parker, from Dereham, Norwich runs The Kerri Parker Model Academy helping thousands of aspiring models start out or further their modelling careers. Kerri herself is an award-winning model and has competed in pageants around the world. She was diagnosed with two different types of brain tumour during the winter of 2013 just before her 30th birthday.  Read more

Kian Jones

The life of schoolboy Kian Jones was saved by his mother’s determination to pursue an accurate diagnosis of her son’s headaches and sickness. Trainee nurse Sabina’s relentless demands for a brain scan proved her instincts were correct. Kian’s condition was life threatening and he underwent emergency surgery. He is now settling back into “normal” life. Read more

Kirsty Barton

Just three weeks after starting her new job, Kirsty Barton, 28, was diagnosed with a brain tumour. The mum-of-two endured surgery in May 2019 which removed most of the tumour and now she is doing well. Kirsty’s diagnosis made her realise how precious life can be and she hopes that other patients will be inspired by her story.

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Laura Liver

After experiencing hot flushes and dizzy spells, 29-year-old Laura Liver thought she was coming down with virus, however she received the devastating news that she had a brain tumour. After undergoing invasive surgery and treatment over the last 18 months to control the growth of the tumour, Laura is determined to make the most of life and enjoy every precious moment as she heads towards her milestone 30th birthday.

“With Marc and my mum and dad by my side we were shown my scans and I let out a gasp. There was a black mass, the size of an apple, on the left-hand side of my brain and it was then the consultant confirmed it was definitely a tumour. I just remember mum crying next to me as Marc held my hand.”

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Leah Martin

Leah was diagnosed with a high-grade medulloblastoma brain tumour at the age of two. She has undergone several operations and a gruelling regime of high-dose chemotherapy and radiotherapy. Now at pre-school, Leah has long-term side effects including problems with her speech and mobility.

“Our little girl was so diminished by the treatment that I pleaded with her consultant not to go ahead with the last two sessions. I felt I could no longer put her through the daily ordeal of a general anaesthetic, of being taken from my arms and laid down on what seemed to me to be a cold slab, and pinned down by a face mask. In the end, I felt we had to trust the doctors and Leah did complete the course of 31 sessions over six weeks. For Leah it was normality and she probably assumed everyone did it; it was worse for us.”
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Lily Hawkins

Lily’s Mum, Lorraine is a trained and experienced midwife, but nothing could prepare her for the day when her six-year-old daughter was diagnosed with a brain tumour, many months after she first started displaying worrying signs which were repeatedly dismissed by doctors. Now Lorraine is determined to raise awareness particularly of the symptoms of brain tumours to ensure that patients are given the earliest possible diagnosis. Read more

Lisa Brassington

Since being diagnosed with a brain tumour in February 2011, Lisa has decided to live life to the full. She has been skiing, is learning to sail, is taking acting classes and has even been on TV as an extra in Emmerdale. The location of her low-grade oligodendroglioma brain tumour meant it could not be fully removed by surgery. A recurrence of the tumour meant Lisa was back on treatment in the early part of 2017.

“During my brain operation, I played on an iPad so the surgeons could see how what they were doing affected my eyesight, speech and recognition. The location of my tumour meant it could not be fully removed and now my ‘loft lodger’ as I call it is growing. The prognosis I have been given is to expect to live for three to five years but this is just statistics and something which I do not dwell on. There are so many things I would like to do and I have decided to live life.”
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Lisa Meenan

Lisa was just 21 when she was diagnosed with a brain tumour. The shock news came as she and her family were coming to terms with the loss of a seven-year-old cousin to the same disease. Lisa underwent surgery and treatment, went on to graduate with a degree in architecture and took up Bollywood dancing a few years ago.

“In a way, being diagnosed with a brain tumour has been the worst thing and the best thing that has ever happened to me. I have had such a happy ending to my brain tumour story but nobody knows what is around the corner or down the road. I have learned that you can’t assume you will live until you are in your 80s or 90s and facing your mortality at such a young age is life-changing. It has taken time to come to terms with these experiences; I am now able to accept this as part of my life’s journey.”
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Lizzi Snaith

After being diagnosed with a rare astroblastoma, Lizzi Snaith’s life has never quite been the same. It was 2008 and she had just given birth to her daughter. Since then, Lizzi has been on a rollercoaster journey, undergoing four operations, two courses of chemotherapy, radiotherapy and Gamma Knife treatment – all whilst being a mum. Looking ahead, all Lizzi wants is some respite from the disease and for her daughter to not have to worry about her mum anymore. Read more

Luke Dustan

Luke had been suffering from headaches and seeing flashing lights. He discovered he had a brain tumour when a university colleague conducted an MRI scan. Currently undergoing chemotherapy, Luke, aged 29, is about to complete his PhD in neuropsychology. He has a twin brother Alex, and a sister Hayley. He lives in South Molton, with is partner Julia. Also supporting him is his mum Angie, who lives in Plymouth. Read more

Lyla O’Donovan

The O’Donovan family’s lives were thrown into turmoil in 2016 when three-year old Lyla was diagnosed with a brain tumour. In the years that followed, Lyla has suffered from endless complications and the family have had to deal with a series of blows along the way. Despite the tumour being low-grade, Lyla’s future is uncertain and her parents are desperately trying to stay strong for their children.

“Telling the rest of our kids about Lyla’s tumour was one of the most difficult things I’ve had to do. Our oldest two, Reece and Olivia, asked: ‘Is Lyla going to die?’ which was just heart-breaking. What was even harder was putting on a brave face and telling them not to worry, when on the inside I was asking myself the same questions.”

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Lynda Mercury

In 2012, just three days before Christmas, Lynda Mercury, 50, was given the devastating news she had a brain tumour. Remarkably, her meningioma had been causing her no symptoms; instead she had an MRI scan because of recurrent sinus infections. After a gruelling 14-hour operation, Lynda, a cake decorator, faced a long journey to recovery while her son, Ben, 12, just wanted his mummy to get better.

I was warned that the procedure could leave me paralysed on my right-hand side or, even worse, I might not come out of it alive. After a gruelling 14-hour operation, I remained in hospital for 12 days, though I barely remember any of it. I had a weakness in my leg, an intense pain in my head and was in a total state of confusion.

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Lynne Collins

Lynne Collins, 61, is undergoing her fifth round of chemotherapy to treat her glioblastoma multiforme (GBM) – the most aggressive form of brain cancer. She has already endured surgery and now faces the difficult decision of whether to undergo radiotherapy which could leave her blind. As a former advanced nurse practitioner, she is under no illusion of how uncertain her future is.

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Lyra Cole

Little Lyra Cole was just five months old when she underwent emergency surgery to remove a brain tumour. Initially misdiagnosed as a virus, Lyra’s symptoms had included loss of appetite and vomiting. The surgery was successful but, within months, she was struggling to see. Happily a second procedure restored her sight. Read more

Maisie Dury

Maisie Dury was diagnosed with a brain tumour in 2007 when she was just two years old. Her parents, Vanessa and Ollie, describe their experience of Maisie’s diagnosis, treatment and recovery.

“As a parent you never expect your child to get a brain tumour, but it can happen. There are so many children out there who do not get diagnosed early enough and whose symptoms are often missed. More children die of brain tumours in the UK than from any other cancer. We think of those children and families every day and are working to support the brain tumour cause in whatever way we can.”
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Maria Pata

Maria was diagnosed with a meningioma in 2010 when her first-born son was just three. She had recently suffered three miscarriages. A couple of times she experienced a weird sensation in her arm akin to the feeling of having your blood pressure taken, but her GP hadn’t taken it seriously. Happily, she decided to get a second opinion and had surgery which completely removed the tumour.  Read more

Marian Dye

Marian Dye first started to get symptoms in 1988. For nine years she visited doctors who put her headaches down to a variety of reasons.  Finally in 1997 she was diagnosed and in 1999 she had an operation to remove a brain tumour. Since then she has lived a full life caring for her deaf and blind husband, going to work, in addition she is also a school governor and spends a lot of time with her granddaughter.

“Most people don’t understand, and what’s more, don’t want to understand how either living with a tumour or having had a tumour, affects you both emotionally and physically.  It also impinges on your family and friends, without their help and support you can’t continue.”
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Matthew Stride

Matthew Stride, 27, popped the question in October 2016 during the holiday of a lifetime to Dubai. His girlfriend Sarah, described it as the “perfect proposal” and said yes. Matthew’s parents were in the Middle East along with his sister and brother and their partners to join the celebrations. A year earlier Matthew was diagnosed with a cancerous brain tumour and told he could have as little as five years to live. Now, he and Sarah are determined to make every moment count.

“Although we had only been together a few months when I was diagnosed, Sarah has always stuck by me and been the most amazing support through everything. She is the one I want to spend the rest of my life with – however long the rest of my life might be. When I dared voice a doubt about whether it was right for me to ask her to commit to marrying me when I have limited time she told me not to be stupid. I think we would have got engaged in due course anyway but living with a brain tumour helped to speed up the process. We hope to marry in 2018 and Sarah is already planning the day.”
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Meg Hill

Meg was aged 19 and about to begin a new life at university when she was diagnosed with a malignant brain tumour.  She was operated on in Boston, USA, having been deemed inoperable in the UK and is now married and living life to the full. Read more

Melanie Hennessy

Having suffered with headaches for many years, Mel discovered she had two meningioma tumours just a few weeks after she gave birth to her daughter, Daisy Boo.  She has lost the sight in her left eye, but is just thankful to be alive.  She wants to do anything she can to raise awareness and funds for research into brain tumours.

“It’s been a really tough time, but I have met some wonderful people through having my tumour and I am very lucky.  I am alive, aren’t I?  I look at my daughter every day and I just feel so lucky to have her. Having a brain tumour makes you open your eyes more and appreciate life.  You have to go through the bad stuff to appreciate the good.”
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Melissa Huggins

Melissa is a twenty-eight year old primary school teacher with a Grade III Anaplastic Ependymoma brain tumour and further tumours in her spine. She was diagnosed in 2005 after many years of not knowing what was wrong.  In 2009 with the help of her sister, fiance and friends she raised £250,000 to send her to Boston, US for proton therapy to shrink the tumour.  She has since had chemotherapy and radiotherapy and is back teaching at school three days a week. Read more

Melissa Ross

When young mum Melissa Ross started to experience pain in her legs, she thought it was caused by being on her feet all day. However, tests revealed she had been living with a brain tumour and this was the cause of her pain. Due to its location she would not be able to have surgery and would need to undergo an intensive cause of radiotherapy to control it.  Despite not knowing what her future holds Melissa is determined to enjoy her life with partner Lee and their five-year-old daughter Millie.

“Just two days before my diagnosis my nan died suddenly from a heart attack. Dealing with this grief and then the news of the tumour was so much to take on board. I was only 24 and just trying to just live my life and take care of my family, I just couldn’t take everything in.”

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Mick Jeffs

When retiree Mick Jeffs, from Haydon Bridge in Northumberland, began volunteering as a driver for the Tynedale Hospice at Home hospital transport service in 2014, the last thing he expected was to be asking for help from the very same service himself just four years later. 

Mick was diagnosed with a grade 3 anaplastic oligodendroglioma at the age of 67. As he reaches the milestone one-year anniversary since his diagnosis and following months of intensive treatment, Mick is enjoying life as a grandad and feeling hopeful about the future. 

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Myah Bell

Baby Myah was ten-and-a-half months old when she fell ill. Initially diagnosed with a virus, she was rushed to hospital where an MRI scan revealed a brain tumour. She underwent treatment and surgery and, happily, is now doing well.

“Myah was in theatre for 19 hours and very shortly after she was having another general anaesthetic so she could undergo an MRI scan. Every time she had a procedure we were warned of the risks; Myah could lose her sight, she might be permanently damaged, she could die. Each time I prepared myself for the worst. For three months, I barely slept and I wondered if the nightmare would ever end.”

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