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Emily’s Fund

Emily was an incredible young girl. She was creative, kind, hilarious, thoughtful and very bright, with her whole life ahead of her. Emily was just 8 years 10 months old when she died from a Diffuse Midline Glioma, just 11 days after diagnosis.


funds raised so far

Emily climbing Snowden

Emily presented with none of the typical symptoms of a brain tumour. No sickness, headaches or eye problems. She was tired in the month before diagnosis but this also coincided with her annual ballet show, summer drama show, big family wedding where she was a bridesmaid, the end of the school summer term and the blistering heat wave. Who wouldn’t be tired? We all were.

We went away on our summer holidays as a family of four on 25th July 2022. The first few days were blissful. Then, on the 27th July, we noticed Emily not using her right hand very much. When we pointed this out to her she shrugged it off and said it just felt “unusual”. She wasn’t in any pain and was otherwise well. The next morning on 28th July Emily woke up and this strange feeling in her arm was now affecting her right leg and she began to walk with a bit of a limp. We also noticed she had a slightly crooked smile. She wasn’t bothered by these things and was merrily playing with her older brother, Harry, and could still run around.

We decided to ring 111 for some advice that morning and they booked an appointment for us in the nearest hospital to where we were on holiday. Emily had blood tests taken at the hospital, which were clear, and a full examination. The doctors were not overly concerned as Emily’s symptoms were so mild and all tests were coming back normal. They considered sending us home to keep an eye on her condition then they decided to ask for one more opinion.  The final doctor did a full range of reflex tests on Emily and decided to send her for an MRI scan, in his words “for everyone’s peace of mind”. The scan revealed a tumour deep in Emily’s brain.

We were transferred to Addenbrooke’s hospital in Cambridge the next day after explaining to Emily that there was a lump in her brain that was causing her these movement problems. She was very understanding but still quite tired at this point. Each day she was more lethargic and her limp grew worse. Her face was getting weaker each day too. She had eye tests, which were normal, and a further MRI scan to check her spinal cord and help them plan her surgery. The neurosurgeons were planning to remove as much of the tumour as was safe to do so but we were told quite early on that they would not be able to remove all of it due to its location in the brain. What happened next was a series of unbearably traumatic events in which the horror of what was growing inside Emily’s brain became apparent. Emily was waiting for the surgery when, on 2nd August, in the early hours of the morning, she became incredibly distressed and started violently throwing up. The tumour had begun to bleed, increasing pressure on her brain, and Emily slipped into a coma. Emily was rushed into emergency surgery where she had two drains fitted to try and relieve the mounting pressure and a biopsy was taken but it was too late. The tumour had taken hold and we were told the unthinkable, nothing more could be done and Emily was going to die.

Emily on a carousel horse
Emily and her dad
Emily and her family
Emily with Harry

Emily was put on palliative care and never woke up again. She died in our arms on 8th August 2022 just 11 days after diagnosis. We were told it was a Diffuse Midline Glioma which is a high grade, cancerous tumour with no cure. Rarely does this tumour behave in the accelerated way it did with Emily but either way, there is no cure, yet. High grade tumours can rapidly become unstable, Emily’s was the worst kind. How can it be in 2022 that something can grow so quickly and aggressively that it can kill such a happy and healthy child in a few short weeks?

Emily in a kayak

We were left numb with shock, trauma and disbelief. Utterly heartbroken and heartbreak physically hurts. Really hurts. Emily was so full of life and now she is dead. Emily had her whole life ahead of her and now she’ll never live it. Our lives will never be the same again. Everyone thinks their own children are special but Emily really was one of a kind. She was all the good things you can think of and none of the bad. Well, she did have a stubborn streak and could stamp a foot like no other!

Emily had character. A feisty, fun-loving friend, daughter and sister. She was the sunshine in every room, a musical, book-loving, beautiful young girl and now she is gone. Words never seem enough to explain how much we all miss her. It’s an empty feeling like no other. Sunflowers were in every available space of the packed church at her funeral. Yellow, her favourite colour, shining through for her untimely farewell.

Emily and her mum

The need for further funding into research to find a cure is so necessary. Cancer is indiscriminate and can affect anyone. Emily is proof of that and more needs to be done now to find better ways of identifying what causes these tumours and how they can be stopped. Brain tumours kill more children and adults under the age of 40 than any other cancer and yet the investment in brain tumour research still represents just 1% of the national spend on cancer research.

Emily playing Ukelele

Our focus now is on raising funds and awareness for this disease to improve the hopes and lives of others affected. It’s all we can do now to ensure Emily lives on through us, that her death means something and that she continues to be spoken about. This dedication to find a cure through Emily’s Fund is for you Ems, we love you, we love you so much.