Edie’s Story

Edie's Story Web Banner Charity
Edie's Story Web Banner Charity
Edie's Story Web Banner Charity
Edie is the inspiration behind everything we do at Edie’s Butterfly Appeal and why we fight for better treatment options here in the UK and ultimately a cure.
In 2011, at the tender age of six, Edie was diagnosed with a malignant ependymoma brain tumour close to her brain stem. Following neurosurgery in Cambridge, Edie’s family was faced with a difficult choice due to limited treatment options here in the UK. Travel to Florida for 10 weeks of specialist proton radiotherapy or undergo conformal radiotherapy, extremely damaging for young and developing brains.

Edie and her mum travelled to Florida in December 2011 for 10 weeks of proton therapy and a happy two year cancer free period followed. However, sadly she relapsed in May 2014 and after undergoing more surgery embarked on a clinical trial of re-radiation in Memphis, Tennessee. Sadly just four months after returning from the US, she relapsed once more and had to undergo further gruelling standard radiotherapy treatment before beginning a course of palliative chemotherapy.

Despite all her treatment, which has resulted in her losing her hair and destroying her adrenal gland and her thyroid, Edie continues to battle on. She still attends school, her weekly dancing lessons and even enjoys football with her classmates. She still dreams of becoming a pop star when she’s older. However, Edie, like all ependymoma sufferers, faces an uncertain future.