Dialog Box

Children's Tumour Foundation of Australia

Thomas' Story

Mum and I are very close and love to travel and do things together. We jointly host the NF Sippers Club Lunch in Melbourne and do as much as we can to support the CTF. 

I was diagnosed with NF1 when I was 14 months old as I had a few café au lait spots and an obvious plexiform neurofibroma on my left breast. I have a Mild Intellectual Disability and had some trouble learning when I was younger, so I went to a Special School.

I did not walk until I was 2 years old and would often fall over and hurt myself. It was later determined that this was due to very low muscle tone and balance, I still have to be careful as an adult.  

When I was 15 in 2011, I had surgery to remove the plexiform tumour on my left breast but it has been growing back so will need to be continually monitored. As part of the monitoring process, I underwent another MRI in 2015 which revealed some additional neurofibromas in my spine. 

A few years later, I started having major back pain and worsening balance problems so went and had another spinal MRI which showed a large Plexiform neurofibroma in my lower back. I will continue with my physiotherapy and hydrotherapy and undergo more MRIs as needed as there are no other treatment options at this stage. I also regularly visit an Ophthalmologist and Neurologist and have MRIs annually to monitor my Optic Nerve and an additional tumour at the back of my brain. So in the last five years, I have undergone a total of 20 MRIs. I will need to keep having them at least yearly. 

Even with this all happening to me, I do not let my NF define me."

Over the last four years I have been spending time learning about photography. What started as a hobby has become a small business where I now make money selling my best images as cards and calendars. The sales are growing and I sold over 125 copies of my 2020 calendar range. I am proud of this achievement and will continue to learn and develop my photography and business skills. 

I used to work in a café two days a week making coffees and helping in the kitchen and I now enjoy cooking at home. I love to travel, and in the past I have especially enjoyed going on cruises. My favourite place in the world is Tasmania and I have been lucky to travel there several times already. I love going on the Spirt of Tasmania and going to the beach and listening to the waves. It is also one of my favourite places to photograph.  

Mum and I will continue to connect and support the NF community and love to attend the CTF Victorian Camps. I also enjoy catching up with other people around my age with NF on the Monthly Facilitated Youth chats. It helps to ease loneliness and it’s good to chat with other people who understand what it’s like to live with NF. My mum and I would welcome anyone in the Melbourne area who would like to join our NF Sippers coffee mornings, or our lunches. Please let the CTF Support Team know if you would like to connect with us.