Evie’s Story

“Emily was an incredible young girl. She was creative, kind, hilarious and thoughtful, with her whole life ahead of her. Emily was just eight years and ten months old when she died, just 11 days after diagnosis.

Emily had 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, a 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.

As a family, we went away on our summer holidays on the 25th July 2022. The first few days were blissful. Then, on the 27th of July, we noticed Emily was not using her right hand very much. We decided to go to the local hospital; blood tests were taken, which were clear. The doctors were not overly concerned as all tests were coming back normal. They 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 Addenbrookes Hospital the next day. 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, and Emily slipped into a coma. We were told the unthinkable, nothing more could be done, and Emily was going to die.

She died in our arms on 8th August 2022, just 11 days after diagnosis. We were told it was a Diffuse Midline Glioma, a high-grade, cancerous tumour with no cure. 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?

Our lives will never be the same again. Everyone thinks their own children are special, but Emily really was one of a kind.”