Jaxon’s Journey Bulletin 19

Hi All,

Update on Jaxon.

Jaxon is still waiting for the trial medication which should be ready September/October 2025. After lots of consultations and discussions we have decided to go ahead with the trial.  We have told the medical team that we will try the medication but as soon as it impacts Jaxon’s life too much or he doesn’t tolerate the drug we will stop immediately.

This medication hopefully will target Jaxon’s gene mutation in the hope to decrease the seizures.

We don’t have many more options to stop these nocturnal seizures which seem to be causing him to be really tired during the day. We are hopeful for a cure, as it breaks our heart daily seeing him struggle.

Jaxon is continuing to thrive at school and he now catches the bus home 3 days a week which is the highlight of his day. He asks for the bus even when we go pick him up.

We were able to go away as a family over the Easter break, thank you to all the donations that help us to do this as a family. We were able to get a house that was suitable for Jaxon’s needs and he had a great time.

We also were able to use the fund to help with maintenance and adjustments to Jaxon’s wheelchair. Jaxon has grown and with that the wheelchair needs to grow with him, and as it’s been used daily some much needed maintenance was needed. NDIS only allocated a small amount of funds for this. So to have the fund to use was a blessing as it makes the process quicker and most importantly Jaxon now will be much more comfortable once the chair is updated. Thank you to everyone who has taken time to donate and to those who continue to take time out of their day to make the fundraising events happen.

Thanks

Lauren & Matt

Update from the Foss

JAXONS JOURNEY FUNDRAISER’S

EVENTS FOR 2025

Jaxon's Journey Bunnings Barbeque

Held at Hawthorn Bunnings on the Saturday of the Australia day weekend. The Trust and volunteers raised just over $2400 for the fund

Good work from a host of people who helped out on the day to make it a success. They sure do like a sausage in Hawthorn!!

Jaxon’s Journey Trivia Night

We held our 2nd annual trivia night on Saturday 5th of July at the Wantirna South Football Club.  

We were delighted to have many sponsors attend on the night including our major sponsor Bunnings as well as TDM Traffic, Access Cranes, Domain Concrete, SBC Plasterers and Harrison Michalis. We would like to extend our gratitude to all of them as well as our many generous supporters, who were unable to join in person.

We ran trivia, played games, auctioned memorabilia and had plenty of laughs. Another successful event!

Rhino Bins Fundraiser

Sean at Rhino Bins who has been a staunch supporter of JJ is now going to deliver to each APM Group project a metal bin ( stencilled with a JJ logo ) to be filled up with all recyclable steel and metals from the site. All proceeds will go to the JJ Trust.

We thank Sean for his continued support of the trust.

DISABILITY TRUST FUND

Nothing to report  

JAXONS JOURNEY WEBSITE

DONATIONS ARE GOING OK AT THE MOMENT- SLOW AND STEADY CAPTAIN KIRK SAID. PLEASE LET YOUR FRIENDS AND FAMILIES KNOW OF THE WEBSITE MAKE A DONATIONS TO A WORTHWHILE CAUSE.  

PURCHASING OF MERCHANDISE IS NOW AVAILABLE THROUGH JAXON’S JOURNEY WEBSITE.  

https://www.jaxonsjourney.com.au/  

TRUSTEES MEETING

Trustees meeting held on Thursday 26 June 2025 was all about the latest updates concerning the Trivia Night which was held on Saturday the 5th of July 2025 at the Wantirna South FC clubrooms..  

Merchandise- To all APM Group people can we make a concerted effort to try and sell all current merchandise available on sites.  T Shirts are now available on all APM Group projects.

Vending machines are on all sites. Sales depend on the number of workers at any one time. Once again, another form of fundraising which is creating regular ongoing income for the Trust.  

CURRENT FUNDRAISING  

NEW INITIATIVES

Recent Cashies for Jaxon’s Journey

Thanks to the initiative from Matt Dole the trust now has another Cashie.

One of APM Groups clients Summerset Oakleigh South have asked the trust to clean up a vacant block of land in South Oakleigh. This task will be completed on Monday the 23rd of December 2024. We thank Summerset for their participation in this fundraiser.

If anyone knows of someone who needs some work done contact MG/Foss/MM.  

Looking forward to continuing to maintain all our support to both Lauren, Jaxon, and Lantern.  

KEEP UP THE GOOD WORK  

IF ANYONE HAS ANY NEW FUNDRAISING IDEAS PLEASE CONTACT  

B, LUC, LANTERN, DELILAH, ECTOMORPH OR FOSS.