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Children's Tumour Foundation of Australia

Grayson's Story

Grayson was born on the 9th of September 2016. He wasn't a textbook pregnancy, nor were his first 24 hours in the world, with a few breathing complication which landed him in the NICU for 4 nights for fluid on his lungs. But once home he was just like any other newborn baby.

There were no signs at this early stage until about three months old when I noticed two faint birthmarks appear on his leg and torso. I, like many, thought these birthmarks were just too cute. By his six month immunisations, I noticed a few more faint birthmarks appear. 

This is when Grayson's GP mentioned the condition NF like it was the common cold, nothing to worry about nor to look into at this stage.

It wasn't until Grayson had an allergic reaction to egg at the age of 11 months old and a trip to the Hospital where the Paediatrician expressed concern.

He wasn't concerned about his reaction to the egg, but about the multiple birthmarks over his body. This is where Grayson's journey began, on the 27th of August 2017. From this point we were appointed a paediatrician, ophthalmologist and a genetic specialist to first diagnose the condition. It wasn't until late January 2018, when a blood test confirmed that he indeed had Neurofibromatosis Type 1 (NF1).

With both my husband Tim and I serving full time in the Royal Australian Air Force, the difficulties began immediately. 

We had only recently been posted from Newcastle to Ipswich in 2017, so after getting the news, we had to start all over again. We began the process of finding a new GP, paediatrician, ophthalmologist and genetic specialist (just to start with).

We received a referral from Grayson's new GP, who was unfamiliar with the condition, to see a paediatrician. This took four months, and after we expressed concerns about Grayson's head size, it was deemed that he needed to have an MRI of his brain. 

The MRI was one of the most traumatising things I have experiences. The process of putting our baby boy under general anaesthetic was horrible. I still have nightmares from his first experience."

This MRI was taken in August of 2018, and confirmed that Grayson had benign tumours around his nervous system within his brain.

Fast forward to that October, I started to notice unusual lumps forming beneath his skin along his spine. During this time we also had his first ophthalmology test with his second specialist. We were lucky to learn that his eyes looked clear.

It wasn't until the July the following year that Grayson's paediatrician agreed to have a look at the lumps growing on his spine. I also pushed him to add his eyes and brain into this MRI to see if there were any changes to his tumours.

He was once again put under general anaesthetic, but this time I was fully prepared. The MRI confirmed that Grayson had a cluster tumour along his spine. His brain tumours had also developed, but were not any threat, and his optic glioma was thickening in both eyes.

This was all before I deployed overseas for five months (20 Aug 19).
I was adamant I couldn't leave without knowing my boy was well enough for me to leave the country.

In July 2019, Grayson started Speech Therapy for his delay in speech, but this was soon cancelled due to staffing issues at the centre. It wasn't until I returned home from deployment that Grayson recommenced his Speech Therapy. He is now doing physiotherapy for his balance issues and occupational therapy for behavioural and social issues on a weekly basis.

I can say all these conditions are all linked to NF1 and Grayson isn't a severe case, but each case is very different and cannot be compared to others suffering from NF1.

Grayson also sees an ENT annually for gagging issues while he sleeps, as well as a hearing specialist for possible Audiology Disorder. He continues to see an ophthalmologist at the Brisbane Children's Hospital, an appointment which took 18 months to get. We see his paediatrician every six months, and his weekly early intervention specialists.

These appointments would not be possible without NDIS support. We would like to thank EACH in Ipswich, who have recognised Grayson's needs, despite the lack of knowledge NDIS currently holds about NF.

We are hopeful that Grayson's MRI's won't increase to more than annually, but this is uncertain as NF1 has its own journey in each body it conquers.

I was seeing a counsellor to help cope with the life our family had been dealt. It was there that it was mentioned that I should find a network who understand the pain and stress NF1 was having on our family. I started searching for this network and this was when I found The Children's Tumour Foundation (CTF), it was only 3wks before the Cupid's Undie Run of 2019. We attended the Brisbane event and this was when our CTF journey began.

We try to stay positive and do all that we can to help CTF find a cure for NF. In 2019, I ran the Gold Coast Marathon, all 42.2 kilometres. I raise $2,500 for CTF. It was a hard run, but after seeing other spectators cheer on all the larger charities, I knew I had to work hard to put CTF on the map.

Since 2020, there have been many struggles with the Bushfires, Floods then COVID all became too hard for many to give a penny. This is when the we decided to ramp up our can and bottle collection, as everyone's trash has become Grayson's treasure.

We now have Grayson's GP donating, 6 families in our community, 35 squadron (my work) and 23 Squadron (Tim's work) all collecting for our cause. 

In addition, my husband Tim makes a homemade chilli sauce and chilli jam from our home-grown chilli's (Ghost, Californian Rippers and Scorpion Chillies) which helps boost CTF with its mission to CONQUER NF.

As a mother who has a child with such a condition and not being an expert in medicine I feel it is my mission is to help educate as many as I can on NF1. I hope that this may help my son Grayson and the many children who are all fighting to live a normal and healthy life CONQUER NF for GOOD!"