Arlo's Journey with HSP SPG4

07/08/2025

On Wednesday Arlo had to have surgery on his legs to remove his metal plates and screws. One overnight stay in hospital and now we are home for recovery. Keeping pain medications up and trying to get him back on his feet for the next couple of weeks. Before and after photos, such a brave kid so proud of him ❤️

31/07/2025

Please help share and sign the petition against the NDIA changes which effect many services including Arlo’s

13,980 signatures are still needed! Stand Up for Disability Support: Stop the NDIS Cuts

25/06/2025

Don’t forget before the end of the end of the financial year to donate, to help fund research into finding a cure for Arlo and many other children and adults with this rare genetic disease ❤️❤️❤️

15/06/2025

These guys are amazing The Saltwater Creative Co, Arlo had the opportunity to create a mug during the previous school holidays. He was super proud to create and paint his Minecraft Steve mug. So many amazing opportunities to be creative, so check them out.

22/05/2025

Happy 8th birthday to crazy happy go lucky kid! We love you so much xx

07/04/2025

Arlo loved the performances at the Silvers Circus the other night. His favourite things were the dogs and the hola hoops. And he laughed so much well worth seeing ❤️

28/03/2025

What a massive week Arlo has had at school! What an amazing achievement and he has taken it in his stride, at school he had Kinect2dance which means he had dancing everyday this week and he refused to use his wheelchair. Plus 1 hour disco after school. He also had cross country at school and they did an amazing job including him in a modified course which meant he got to run on grass with his walker for the last part of the race and across the finish line. The amount of effort and determination this must have been for him, such a super star. Oh and he also managed to sneak in a hair cut with Emily at Mat's Hair Factory

22/03/2025

Bike ride, Donut, Hot Chocolate and Shopping ❤️

Big Bears Donuts
#2025

27/02/2025

Arlo is one of these people with a rare disease.
In Australia it is estimated there are around 1900 living with HSP and 600,000 worldwide.
Hopefully as time goes by we will start to have some cures for even a small amount of these diseases.

Rare Disease Day 28 February 2025.

01/01/2025

Happy New year everyone!
What a crazy whirlwind of a year 2024 was. But Arlo smashed it!
With major surgery and re learning to walk again, to starting at a new school. What an amazing kid and his big brothers are just as awesome supporting him through it all 💙💙💙

24/12/2024

Merry Christmas from our family to yours, thank you for all the support throughout the year 🎄🫶🏻

14/12/2024

Well what a busy few months we have had! Arlo has been doing an amazing job and has come leaps and bounds with his reading and writing. Which is awesome considering he has missed out on a whole term of schooling this year.
He has also been back to the he Royal Children’s Hospital for a number of appointments. Which has shown really good progress.
And now he is super excited for Christmas! He helped his brothers pick a Christmas tree from a farm and then got to decorate it ❤️