After complaining of constant headaches, Jo took her 13-year old daughter, Millie, to the doctor for an MRI scan, only to find out that she had NF2.

Having no prior knowledge or family history of the condition, Millie’s diagnosis came as a complete shock for Jo and her family.

“When I first hear about Millie’s diagnosis my first thought was – what is neurofibromatosis?” recalls Jo. “The doctor couldn’t answer any of our questions but told us not to worry as he would send her to a specialist. Once we found out what NF2 actually was, then came the shock and disbelief, followed by an overwhelming feeling of anxiousness and helplessness.”

Scans revealed four tumours in Millie’s brain, three tumours down her spine, and one on her right auditory nerve. Of the many challenges ahead, Millie faces her most life-changing battle to date in the coming year as doctors are planning surgery to remove the tumour on her right auditory nerve. It is expected that she will no longer hear in her right ear after the procedure.

Millie has started Avastin (Chemo) in 2015 for the growing tumours on her ear nerves.  She has also had a portocath put into her chest, making the Avastin easier to administer.

“I would cry at the mention of it, and still do a little bit,” says Jo. “I am terrified of what the future might bring and that she may never have the kind of life we had imagined she would and should have.”

Like most parents and families affected by the common yet under-recognised condition, Jo struggles with the lack of awareness and support currently available for NF.

“People look at you and go ‘Neuro what?’ It is a very isolating disease and you feel like you are the only one,” says Jo.

Fortunately Jo has found much support from other parents and families in various NF and NF2 groups on Facebook.

Millie has undergone many MRI scans and visits Sydney from her hometown of Tamworth every six months for regular check-ups.

The NF journey has only just begun for Millie, Jo and their family. There is a long road and many battles ahead, but the family is determined to continue enjoying each day.  Millie is now 15 and she has only missed a few days of school thanks to her doctors willingness to organise around the family’s schedule.  Millie has even gotten back into playing hockey, thought it worries Jo about the safety of the portocath.  Mille is still a very happy girl and is determined to not let anything stop her in her life.

“Millie is the happiest, bravest kid I know,” says Jo. “As one mum said to me, it’s all about learning to live with your new kind of normal. I guess I’m still learning, and will be for a while.”

“We try really hard not to think too far ahead anymore as taking one day at a time is really the only way to survive this I think.”