Dialog Box

Children's Tumour Foundation of Australia

Kaitlin Winter's Story

My name is Kaitlin, I’m 25 years old and I was diagnosed with Neurofibromatosis type 1 when I was 5 years old and the only person in my family to have this genetic condition. 

I am a proud Aboriginal woman from the Kamilaroi nation of northern New South Wales.

I was born on the land of the Darug people in Western Sydney, where I live today, and I spent a lot of my youth living in Canberra on Ngunnawal and Ngambri country.

When I was born, the nurse noticed that my left foot was slightly turned and even felt a little different to my right. It was slighting larger, raised and not as firm to touch.

After numerous doctors’ appointments and scans, they discovered I had a plexiform neurofibroma growing in my left ankle.

There was a point when I was around seven years old that my specialist and a team of doctors believed that amputating from the knee down was the best thing to do as there was no way to remove the tumour without losing full function and major nerve damage.

Not surprisingly, my parents sought a second opinion before taking such drastic measures. I visited Dr Stalley in 2005 who is very experienced with NF1 patients and soft tissue tumours. 

He monitored me closely over a few different appointments and did not believe that amputation was necessary at the point, or event at all. Instead, I had an MRI every two years to keep an eye on the growth and development of the tumour in my ankle, as well as any other changes in my body.

I was a very active child; always playing sports, outside running around, riding motorbikes and just doing things kids do. That does not mean I was not impacted by it. Simply by being on my feet all day would cause some pain and discomfort (and still does), but as an adult I have my own ways of managing the pain.

It was not just the physical complications of my condition that caused issues during school, but the psychological ones too. I was bullied quite a lot for being “different”, which continued even after I had finished high school.

It’s only natural to start questioning yourself and think “why me?” I often wished I could be like everyone else; to fit in with society. I tried my best to keep a positive mind set and never let it get the better of me.

We are all different and we are all unique.

Following a routine scan in 2013, which showed it to be quite stable. quite a number of years passed without any noticeable change in my plexiform and only a few new café-au-lait spots/ bumps on my skin.

However, I had transitioned from the paediatric system and needed to find a team that would support me as an adult. I was lucky enough to connect in with the NF Clinic at Royal North Shore Hospital who helped me get back on top of things – starting with an MRI to get a new benchmark.

The team were concerned about a hard mass that was developing within my plexiform neurofibroma. I was sent for a PET scan to see if they could get a clearer understanding of what exactly was happening. Four days passed before I was given the news that my plexiform may have developed into something more serious – cancer (MPNST). Something that happens in around 10 per cent of cases.

I was booked into surgery within 3-4 weeks. It was August 2021, and the world was still managing the impact of COVID, so my surgery was postponed an additional two weeks, which felt like an incredibly long time to wait. However, Professor Paul Stalley did manage to successfully removed the hard mass, and a biopsy revealed it was benign. I was lucky.

I have lost slight feeling in my foot where the incision was made, and now need to keep my foot strapped each day, but apart from that there have been no other side effects. This was a great outcome compared to what I was preparing myself for. I am now aware of how important it is to remain vigilant and have regular screening.

Throughout my life I have completed and done things people told me I couldn’t. I have achieved goals I never thought I could, including a Certificate of Registration in real estate and strata management. I have also completed a diploma in project management and am now working in the Australian government public service.

I have overcome challenges and will be forever grateful for having such amazing parents who encouraged me to be myself and to not let anything stop me.

As a young woman suddenly heading down a dark and scary path that I was not prepared for, it certainly made me stop and think about life with fresh eyes and always trying to say “yes” to opportunities that come my way.

Everyone with this condition has a different experience. It can affect us in so many ways. Being the only person in my family with NF1 has meant there are often times when I have felt like there is a division between what I am going through and what the outside world sees.

Speaking to someone who just “gets it” is so important. I have had a wonderful experience talking to a genetic counsellor who has helped me accept who I am and overcome these feelings. I know that the Children’s Tumour Foundation also provide this support and recommend anyone who feels this way to seek help.

In sharing my story, I hope to bring NF out of the shadows, raise awareness so that one day we can find a cure.  I hope this has given someone with NF reassurance that you are not alone, and we are all beautiful in our own way.