Dialog Box

meet grayson

Grayson has tumours growing along his spine, around the back of his heart and behind both eyes. He also has ADHD and Autism Spectrum Disorder, secondary conditions that impact his learning, ability to pay attention in class and interact socially with others.

Grayson was never born with any markings on his body, but at 12 months he was hospitalised for a skin reaction to eggs and by this time, he had developed a number of coffee-coloured marks over his torso, back and legs. 

That was when his parents, Jen and Tim first learned that there was something different about Grayson - that those beautiful little brown marks weren't so beautiful.

One of the first indicators of neurofibromatosis type 1 are coffee-coloured spots, known as café-au-lait spots.

A genetic test confirmed Grayson had neurofibromatosis type 1 (NF1). He would now need a team of specialists to help manage and monitor his condition on an ongoing basis, but finding healthcare professionals with knowledge of NF proved challenging.

After relocating to regional QLD, their new GP was not familiar with the condition, which resulted in additional delays in gaining a referral to see a paediatrician and the MRI of his brain they know he needed.


Grayson had his first MRI when he was about 15 months of age, which confirmed that he had already started to develop tumours along his nervous system and in his brain. 

“The MRI was one of the most traumatising things I have experienced. The process of putting our baby boy under general anaesthetic was horrible. I still have nightmares from his first experience,” says Jen, Grayson’s Mum.

A few months later, unusual lumps started forming beneath his skin along his spine. It was not until the following year that Grayson’s paediatrician agreed to look at the lumps. Another MRI confirmed a plexiform neurofibroma (PN) had started to develop.

PNs are a specific type of tumour found in NF1 patients that wraps itself around the nerves, causing pain, weakness, numbness and can even become cancerous.

Many tumours are inoperable and only a small number of effective treatments exist, which is why monitoring and surveillance remains the cornerstone of NF treatment.

An annual ophthalmology appointment revealed that his optic glioma was also thickening in both eyes and brain tumours had also developed.

Grayson sees his paediatrician every six months, but also has weekly sessions with a physiotherapist, speech therapist and occupational therapist to help address delays in muscle development, speech and behavioural issues. He has also been diagnosed with ADHD and Autism. Secondary conditions that are commonly seen in children with NF.

Like many other parents, Jen has become an expert in NF and has had to navigate her own path through a very complex set of medical issues. Their family are also huge advocates for the community and active fundraisers, taking on fun runs, school-based fundraising during NF Awareness Month, Bunnings BBQs, bottle collections and even selling chilli jam to help raise funds for the Children's Tumour Foundation.

Why do they do all of this? Because they know how important it is to have a support network in their corner, not just today or tomorrow, but throughout a lifetime - because that is what NF is, it is for life. 

The Children's Tumour Foundation is the only patient advocacy and support service for NF families in Australia.

Right now, Grayson is watching and waiting. Waiting for the next MRI, the next specialist appointment and the next tumour; wondering what impact it may have now or in the future. 

He is hoping the 13cm tumour along his spine does not become malignant or that the tumours behind his eyes do not start to impair his vision. NF is progressive and unpredictable, but this is the reality facing more than 13,000 people in Australia today and a reminder of why greater investments into services, support and research is critical.

But, we need your help to make this happen.

Despite all of this, if you ask Grayson how he feels, he simply replies...


You can learn more about Grayson and his NF journey by watching the video below.