LIVING with Neurofibromatosis (NF), as thousands of Australian children and adults do, means living with a condition that causes tumours to grow on nerves within the body, including in the brain and along the spine.

While NF is one of the most common genetic neurological conditions in Australia, advocates say it is poorly understood and underfunded.

As part of NF Awareness Month this May, the Children’s Tumour Foundation (CTF) aims to make further investments into life-changing research through the launch of a new virtual fundraising challenge, Steps Towards a Cure, which is free to register for across Australia.

“We are nowhere near a cure for NF, recent developments in treatment options have proven promising in slowing the development of some tumours but are limited in terms of accessibility and most are still in the trial phases,” said Leanne Dib, Chief Executive Officer of the Children’s Tumour Foundation.

Millie, who lives in Coffs Harbour, was diagnosed with NF2 at age thirteen after experiencing a number of severe migraine headaches which left her on the couch for hours.

Telling her story, Millie, now 22, shares how she received her daunting diagnosis through MRIs on her brain to see where her headaches were coming from.

“They revealed vestibular schwannomas on both hearing nerves, as well as multiple smaller tumours spread out down my spine,” she said.

“Before my family and I knew it, we were on a scary and unpredictable journey; meeting many different specialists, surgeons, doctors, geneticists, counsellors and audiologists, mostly at Westmead.”

Over the past nine years Millie has undergone experimental drug infusions on and off and had to undergo surgery as her brain stem was being compressed.

She became a candidate for an Auditory Brainstem Implant (ABI), the second ABI implantation ever done in Australia, which maintained a degree of her hearing.

“My hearing has come back significantly since starting back on Avastin in March this year,” Millie said.

“I have tried not to let this crazy NF2 journey stop me from doing the things I love and dream about; from playing sport, going to the gym or studying for my dream career as a vet nurse,” she said.

“I am a quiet but determined person and I like to think I have met every challenge that has so far been thrown at me, I cannot say it has been easy but I’m luckier than some and I try to look ahead to the future with hope that one day someone out there will find a cure for NF2.

“I want to help bring NF out of the shadows because it affects people in so many ways and changes their way of living.

“People should not be treated differently because of NF as it is worldwide.”

To find out more about Steps Towards A Cure visit www.stepstowardsacure.com.au.

By Andrea FERRARI