I was diagnosed at just 3 years of age on the 24th of February 1992.
As a young person I took part in many studies including sibling ones - my siblings don’t have NF.
When I was first diagnosed, not much was known about NF and since my siblings didn’t have it and I had a spontaneous case, we were perfect candidates.
Over 17 years, I have had more than eight surgeries. I had my first surgery in 2004 when I was 15. It was to remove numerous tumours from my hand that were causing a bit of discomfort. This was a trial surgery for me to see how much damage was left. Since I wasn’t left handed, it was a good starting point. This was followed by another surgery on my finger which required a nerve graft from a vein in my wrist, this surgery was done in 2013.
In the years that followed, I had a couple surgeries to remove tumours from my neck and another to remove from my sciatic nerve. I didn’t even know the ones in my sciatic nerve were there; they showed up on a PET scan so it was more vital they were removed. The surgery involved removing tumours from inside the nerve, which is a lot more complicated and recovery was long but I was back to work in about 4 weeks.
In 2017, I had an intercostal neurofibroma which was touching my lung. Once again, I didn’t know it was there, but it showed up on a PET scan. I remember my surgeon asking what I was doing in the next two weeks. I told him I was going back to work (I'd just gotten home from the UK) and he said, “no you’re not, you need surgery”. It was my first surgery without Mum in the country (she was due back in 2 months) so my younger sister came with me.
In many ways I have been fortunate to be able to address many of the major issues raised by my NF through surgery, but this has not been the case with my most recent diagnosis.
A polycystic astrocytoma was found in my brain in 2020. It was made of up two parts, one that was still in stage 1, but the other had already reached stage 3.
My team of doctors were able to remove the stage 1 sections, but have not been able to remove the more aggressive part of the tumour due to it’s location.
I am currently undergoing chemotherapy to try and slow the growth. I was in hospital for 106 days recovering. Over 90 were in ICU.
For the last seven years I have had a PET scan every 12 months, which has recently dropped to 6 months. Over 50 tumours showed up in my latest PET scan in my right forearm. After having constant headaches mid-way through 2020, an urgent MRI revealed the tumours in my brain and the seriousness of the situation.
When I was in primary school, I pretended my NF didn’t exist, but in high school I was able to take part in the disability swimming races at the diocesan level.
Throughout high school I was able to use a scribe and a reader for exams and I had a teacher in class who did all the writing for me. After school I went to TAFE and did my diploma in community services (child care). I then moved to the central west of NSW and worked full time for 10 years. In that time, I have also fostered over 30 children. Something I have found incredibly rewarding.
I also started a Bachelor of Early Childhood and had just one subject left before needing to take time off due to my surgery. It has also prevented me from returning to work this year but it has not stopped me from using my story to help raise awareness of NF.
On a positive though, I have been overseas twice in recent years, and did one trip (to the UK) solo.
I want to bring NF out of the shadows because it is important to know it's not a life sentence.
Children with NF can do anything! It might take a bit longer, but they’ll get there.
Everyone with NF is so different and no two stories are the same. Just because something happens to one person doesn’t mean it will happen to you or your child too.
I’ve always been considered a severe case, but I have also achieved so much.