Little Ellie is the Belle of the ball (From Messenger Newspapers)

Sale mum organises Fancy Dress for NF event

8:00am Thursday 17th May 2012 in News By Chris Griffin

SALE toddler Ellie Jim will be dressing up as one of her favourite Disney characters today – to raise awareness of a chronic and incurable condition she and thousands of others suffer from.

The 22-month-old has neurofibromatosis (NF) – a genetic disorder that causes multiple tumours.

The toddler will be donning a glamorous gold dress at her Sale nursery as she takes the role of Belle from ‘Beauty and the Beast’ during the first Fancy Dress for NF Day, an international initiative launched by her mum, Carly.

Carly, who is holding the event to coincide with World NF Awareness Day, had never heard of NF before her daughter was born - and now she wants to ensure that others understand about the condition that one on every 2,500 people are born with and affects 25,000 people in the UK.

As well as multiple tumours, it can cause complications that include blindness, deafness, disfigurement, severe pain, skeletal problems and cancer.

Carly chose the fancy dress theme for her event – which is backed by the Neuro Foundation charity – because Ellie loves dressing up.

Carly, who is married to John, said: “Ellie is a wonderful, happy and gutsy little thing – and totally inspirational.

“She has umpteen hospital visits but does not let it get her down.

“I want to make the whole world have Ellie’s spirit – I want everyone to see NF in a positive way while doing something they enjoy.”

Ellie, who was diagnosed with NF when she was five months old, will be taking part in the event with brother Danny, aged three, and their classmates at Busy Bees Nursery, on Glebelands Road, Sale.

Psychologist Carly, aged 31, of Atkinson Road, added: “NF is more common than cystic fibrosis, Duchene muscular dystrophy and Huntingdon’s disease combined, but it is a condition that has been largely ignored.

“There is such a backward attitude to NF that some people still refer to it as the ‘Elephant Man’s disease’.

“We don’t know what Ellie’s future will be. Already she has a large tumour in her leg and a severely deformed chest.

“The medical complications are difficult enough to come to terms with, without the fear of how her illness is perceived.

“All I want is for my daughter to grow up happy, with the best possible care in a world where such ignorance no longer exists. “ There are numerous events taking place across the country today (Thursday) to support Fancy Dress for NF, including funny hat tea parties, non-uniform days, wear blue to work, fancy dress pub crawls and coffee mornings.

Marks & Spencer in Sale will be collecting on behalf of the campaign.

There is also international support, including from United States organisations the Children’s Tumour Foundation, the Just Ask! Foundation and Beauty Mark Nation.

All funds raised by the event will go to charities that support people with NF.

To donate, visit justgiving.com/teams/Fancydressfornf