Arlo's Journey with HSP SPG4

11/12/2025

08/12/2025

Big day for us all yesterday! Left Lakes to get to the Royal Children’s by 1:00.
Arlo then had 4 appointments- hydrotherapy, x-rays, Orthopaedic specialist and then Orthotics. We managed to get home at 9:00 last night.
Amazing news they are happy with his progress and what his surgery has done for him and to keep up the good work!

04/12/2025

NDIS FAIL!!!!!
We haven’t been posting lately, we have been really busy between school, work, therapy and getting everything ready for Christmas.
But one thing that has been the hardest and most time consuming has been the NDIS and getting Arlo his new plan! Well the NDIS has definitely failed him this time around!
We only asked for the same amount therapy hours that he used this year for speech, OT and physiotherapy which has all been spent. We do not ask for extras like a support worker to help, we also do therapy with him on our own in our home with no support.
But guess what they have cut his therapy hours in HALF!!! So it will mean he will deteriorate quicker and his speech and personal skills will take many more years to develop which he will then fall further behind.
So now we have to spend more time that we do not have to appeal their decision. Not cool NDIS

31/10/2025

Happy Halloween!
Arlo’s really just wanted to hand out lollies this year ❤️

05/10/2025

These guys do some amazing work with Arlo!

28/09/2025

Arlo smashed out the first week of school holidays with intensive block therapy. 15 hours in 4 days completd including Physio, OT and Speech with the amazing team Geelong Neuro Centre. Arlo has recovered from surgery, this round of therapy was around getting his confidence back up and relearning what his body can do.

21/08/2025

Book week! Arlo was very excited for book week and choose to dress up as Grogu 💚💚

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