Dialog Box

Children's Tumour Foundation of Australia

Fiona's Story

I was diagnosed with Neurofibromatosis Type 1 when I was just 2 weeks old at the same time as my father.  

I was diagnosed, only because a doctor saw that my dad had numerous neurofibromas (or external lumps) on his arms and recommended he run some tests. Shortly after, the results came back that both my Father and I had Neurofibromatosis. A condition that is progressive, unpredictable and has no cure. 

Even though I have NF1, I feel very fortunate and compared to others, I feel the challenges I have faced have been relatively minor. 

I have a tumour on my optic nerve, which was treated with 12 months of chemotherapy. Optic gliomas are common in kids with NF. 

The chemotherapy was hard, however I was fortunate enough to retain my vision and not need ongoing treatment as my tumour stabilised.

I also have a developmental problem in my neck, which will require surgery in the near future. 

Other than that, my friends have been my saviors. They are a constant source of support and when I am with them, I forget that I am different and that my experiences aren’t necessarily what other children, who don’t have NF, may face. 

I am determined to make the most of this life that I have been given and hope to dedicate my spare time to travelling and making a positive difference in the world.