Edies Butterfly Appeal

Edie's Butterfly Appeal

Edie's Butterfly Appeal was set up in July 2014 to raise much needed research funds for childhood ependymoma - a common form of malignant brain tumour in young children. After raising an incredible £50,000 in just twelve months, the appeal founders decided that Edie’s Butterfly Appeal should become part of CCLG.

All funds raised for Edie's Butterfly Appeal will support ependymoma research through CCLG.

Edie's story

At the age of six, Edie was a happy, healthy, active little girl who enjoyed swimming, dancing and, of course, Disney princesses. But then shortly after her sixth birthday she fell ill with what appeared to be a sickness bug. After numerous trips to the GP and A&E, a scan revealed a large mass on her brain, a malignant ependymoma brain tumour.

Following an eight hour neurosurgery to remove the tumour at Addenbrookes Hospital in Cambridge, the family were told the only treatment available to them in the UK was standard radiotherapy.

However, because of her tender age and the potentially devastating side effects of radiotherapy, Edie was instead flown to Florida for pioneering proton therapy.

Two happy, cancer-free years followed in which Edie returned to school and even joined the Brownies, but then, in May 2014, a routine scan revealed the devastating news - the tumour was back.

Edie underwent further gruelling neurosurgery and, again, with limited treatment options available in the UK, travelled overseas to Memphis, Tennessee to take part in a clinical trial of re-irradiation. Sadly just four months later in February 2015, the family were told that Edie’s cancer had spread to her spine and she immediately began an intensive seven-week course of full cranio-spinal radiotherapy, this time in the UK.

The radiotherapy did not remove the entire tumour and Edie is now on a course of chemotherapy. The large doses of radiotherapy have sadly damaged her adrenal gland and she is now on daily medication to counteract that.

Despite all her treatment, which resulted in her losing her hair, Edie continues to attend school, her weekly dancing classes and even enjoys football with her classmates. She still dreams of becoming a pop star when she is older.

However, Edie like all ependymoma sufferers faces an uncertain future without your help.

Read more about Edie's Butterfly Appeal on the appeal website

Get involved

Make an online donation to Edie's Butterfly Appeal

Start fundraising for Edie's Butterfly Appeal

Set up a regular donation to Edie's Butterfly Appeal by Direct Debit

You can make a donation by cheque, payable to CCLG, and sent to us at this address. Please ensure you make it clear that the donation is for Edie's Butterfly Appeal so that your donation is allocated to the correct fund. 

You can also make a donation by text message. Text EDIE to 70300 to donate £3. Terms & conditions of text donations

Buy Edie's Butterfly Appeal merchandise from our online shop