Dialog Box

Children's Tumour Foundation of Australia

Hayley's Story

I am the only one who has it in my family. My NF was caused by a spontaneous genetic mutation.  

NF causes tumours to grow on your nerve endings all through your body!  

On rare occasions, the tumours can turn malignant (cancerous) and that's what happened to me in 2012.  

I have had many MRI scans and eye specialist checks to monitor for tumours throughout my life, often checking for tumours behind my eyes and along my spine! (Usually, people with NF need to have regular MRI’s to monitor them for tumours because optic gliomas and spinal tumours are common.)

On the 5th of June 2012 I had a biopsy done on one of my neurofibromas. On the 12th of June 2012 I got told that I had a sarcoma cancer (Malignant Peripheral Nerve Sheath Tumor), which meant that one of my many neurofibromas turned into cancer."

This is a rare complication of NF.  I started 6 weeks of radiation therapy immediately and then had to wait 4 weeks for the radiation damage to settle down before I could travel from Tasmania to Melbourne for surgery.  

On 16th of October 2012 I flew interstate to have a 10 hour operation to remove the cancerous neurofibromas. I was in hospital for 4 weeks, and then had to stay over in Melbourne for an extra 2 weeks until I was finally able to come back home.  

Living with NF1 can be challenging as it causes many different symptoms and can be painful and irritating. 

Neurofibromatosis is always going to be a part of my life and I will continue to live with the condition. 

Today I am working in a job I love as an early childhood educator and enjoying each day as it comes.  

I hope one day there is a cure for NF for me and many others who suffer with tumours as our “normal”.