At the end of November myself and my husband David attended Edies Butterfly Appeal Charity Ball along with our friends Naomi Isted and her husband Hadyn at the Grove Hotel in Hertfordshire. Also joining us were the lovely Inanch & Joe from Inanch London and Pia Michi Owners Penny and Syd.
The ball was to raise awareness and money for Childhood Epenymoma a form of brain cancer and everyone who attended certainly did just that! The night raised an incredible £90,000 for the charity.
Here’s 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.
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.
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.
Brain Tumours are the biggest cancer killer of children and young people. Only 16% of those diagnosed are still alive 10 years after diagnosis and many suffer physical and mental disability as a result. Ependymoma is the third most common form of all malignant brain tumours in children yet it still remains one of the least understood of all brain tumours. It is not known why ependymoma develops and as such is difficult to treat as it has proved largely resistant to traditional chemotherapy drugs and therapies. Edie’s butterfly Appeal has already raised over £50,000 for ependymoma research projects. The appeal aims to fund other medical research into this devastating disease in the UK and in August 2015 joined forces with Children’s Cancer and Leukaemia Group as a Special Named Fund.
The facts
Brain tumours are the biggest cancer killer of children and young people – one child every three days is lost to the disease.
Every year, more than 500 children and young people will be diagnosed with a brain tumour – of which one in four will die from their disease.
More than £500 million is spent on cancer research in the UK every year – less than 2% of which is spent on brain tumour research.
Every £1 raised by Edie’s Butterfly Appeal goes to fund research projects in the UK. All our fundraisers and administrators are voluntary.
(1 Source: The Brain Tumour Charity)
How can you help?
Make a donation or raise funds online
Text EDIE to 70300 to donate £3
Cheque donations should be made payable to
Edie’s Butterfly Appeal and sent to
Equity House, 4-6 Market Street, Old Harlow,
Essex CM17 0AH
Get in touch
www.ediesbutterflyappeal.com
Email us: ediesbutterflyappeal@yahoo.co.uk
@ButterflyEdie
