Rory's Warriors

04/09/2026

Connor's Run - Tannum Sands - is coming!!
Be part of Australia's single largest event for paediatric brain cancer and help children (and their families) fighting this deadly disease.
More details to come - but SAVE THE DATE
SUNDAY 11TH OCTOBER

26/08/2026

OK- so when I posted this there was an explanation attached - which somehow never made it to this post 🤷‍♀️
This was Rory's turn to unload the dishwasher. Job not quite completed - not because he's lazy but because he doesn't see 😔
Cortical Visual Impairment is untreatable and permanent. Another permanent side-effect (invisible disability) of brain cancer 😪
On top of this the optic nerve of his left eye (that sends the images from his healthy eyes to his brain) is pretty much useless - caused by his previous hydrocephalus.
You can imagine how this Impairment affects his function - both in movement and learning. Yet most people have no idea about it.
Soldier on Rory 💪🙌

07/07/2026

We travelled down to Brisbane again last week - MRI was STABLE 🥳🎉 !! YAY for another 6 months 😁
Dr Tim the oncologist made a plan for neuropsych assessment 🤓 and starting rehab in September, to help determine the best ways for Rory to learn and make the most of his incredible brain 🧠💙
Mum loved the coffee ☕️ machine (especially after the late night 6 hr drive there!) and the wonderful hospitality and convenience at the house 🏠 🙏
Flashback to Rory 8 years ago when he spent 2 months in the neck brace following spinal cord surgery on his largest tumour ❤️

24/05/2026

A huge THANK YOU!! to everyone who showed up today for our Go Grey in May event 🙌

It was a beautiful morning, with wonderful company, so much delicious food, a little bit of running and more than $1200 raised for kids with brain cancer!!

So grateful for the donations, if you were still hoping to donate the link is in the bio 😘

24/05/2026

A huge THANK YOU!! to everyone who showed up today for our Go Grey in May event 🙌

It was a beautiful morning, with wonderful company, so much delicious food, a little bit of running and more than $1200 raised for kids with brain cancer!!

So grateful for the donations, if you were still hoping to donate here the link 😘:

https://www.rcdfoundation.org/fundraisers/boynetannumsaltywildrunners?ref=ch_3TaXg22PF2xrtnRh0RweTCT6

15/05/2026

We are so grateful for the funding and support Rory receives from the the schools, the various charities, the education vision centre.....
But this comes at a price. To access this funding you must itemise every single fault, issue, struggle and emotionally challenging moment they have ever had.
The first time we had to do this was with the primary school, during covid, over a zoom meeting. We met with the school to write an application for funding for extra support for Rory as a child with a disability. Even acknowledging that our son has a disability was a really tough thing to accept.
But then to score about 50 different tasks with a number out of 5 as to how severe these challenges were was heartbreaking. We were advised to think of Rory on "his worst day" so that he might receive enough funding to give him a better chance at a "fair" life.

14/05/2026

Seeing your 12 year old child fall asleep hanging off the edge of a bed mid-morning because he had a late night.

Feeling the wrath of emotions from a child who spent all day at school focusing, concentrating, trying to emotionally regulate, do his school work, play with his mates - to hit a huge wall at 7pm when everything becomes too much.

Living every day with the added mental load of planning, caring for, worrying about, extra medical appointments, on top of all that normally comes with a family.

The stress on your nervous system after living in this brain cancer world for 8 years. The fear associated with every headache, pain, ache or unusual symptoms.

Wanting with every part of you for your child to get to live a normal life but seeing the reality and knowing they can't.

And carrying all of this while still being a parent to your other child (ren), a loving wife/husband, a competent employee, a friend, a contributing member of society, a daughter/son/sister/brother to your in family.....it's tiring 😴

13/05/2026

Hope you can make it - open to everyone! You don't have to run, you are more than welcome to join us just for breaky if you prefer 😉

Any distance you like, aiming for an 8.30am finish to share a BYO BBQ breakfast together.

Let's raise awareness and a few $ for paediatric brain cancer together 🩵💛🧠

Donations on the day or via the link in our bio 🤗

09/05/2026

"We found a large mass" - words no parent ever wants to hear after being ushered into a dark, quiet room by the neurosurgeon.
Words no parent should have to hear.
Brain cancer is the deadliest of all cancers, with little to no progress in treatment, survival rates, or permanent, life-changing sude effects in over 30 years. How is this even possible in 2026 when AI technology can do almost anything?!
Please help us go grey this may for brain cancer awareness 🙏

08/05/2026