Dialog Box

Children's Tumour Foundation of Australia

Cassie's Story

My name is Cassie, I’m 25 years old and I was diagnosed with Neurofibromatosis Type 1 at just 18 months old after a health nurse noticed and questioned my café au lait spots. 

Since then, I’ve had several surgeries to remove neurofibromas over the years. My first surgery was at the age of 7 when I had my first tumour removed from my knee, and my most recent one was in July 2019 when I had a large lump removed from my neck.   

My plexiform neurofibroma meant that I couldn’t play any contact sports during my child and teen years which made me really upset as all I wanted to do was play footy like my brother or netball like my sister.

My big turning point came when I had my large plexiform neurofibroma removed at age 16. It not only gave me full mobility but also gave the confidence to wear things I had never worn before. 

From there I bought my first ever pair of proper shorts, and began feeling so much more confident, In my own skin. My body confidence issues relating to my NF meant that I never owned a bikini as I never quite felt happy in one. Last year, I bought my first ever bikini and liked the way it made me feel.   

In October 2018 I started playing netball in a mixed team and I just love being able to run around and just get to enjoy the game. Even if I do still catch people staring at my knee every once in a while, I still love getting to run around.  

In 2016, I finished my bachelor's degree in business administration, and from there began working full time as a fund administrator in superannuation. 

I always count myself as lucky as although my NF affected me, it didn't hold me back from everything I wanted to achieve.   

As I get closer to my mid-twenties, I want to ensure that others who are also going through their NF journeys know they are not alone and its okay if you look a little different and people are only staring because they don’t understand it is not about you as a person.  "

I would like to help bring NF out of the shadows as I want anyone living with NF to know they are not alone and there more people around them that understand than they realise.