Jaxon’s Journey Bulletin 22

Hi All,

We have had some incredibly tough months, with Jaxon’s seizures becoming more relentless than ever. The last EEG showed continuous seizure activity throughout sleep and some spikes during the day. After a lot of discussions with his medical team, we have started a new trial medication called Cenobamate.

Like all epilepsy medications, it comes with potential side effects. Some of the more serious side effects can include:

• Severe allergic reactions

• Rash

• Extreme drowsiness or fatigue

• Mood and behaviour changes

• Difficulty sleeping

• Problems with coordination and balance

• Serious reactions affecting multiple organs

Sadly, we have reached the point where we have run out of treatment options to help control Jaxon’s epilepsy. Right now, this medication feels like our last chance to find something that works, to reduce his seizures, improve his quality of life, and hopefully allow him to make some small but meaningful gains.

Making the decision to start another medication wasn’t easy. It’s hard to know what the right choice is when Jaxon can’t tell us what he wants or how he’s feeling. As parents, we constantly find ourselves making impossible decisions and simply hoping we’re making the right one.

We’re keeping everything crossed that this medication brings Jaxon some much needed seizure relief.

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We’re also still working through reports and assessments with the NDIS regarding our Kia Carnival modifications. At this stage we’re hoping to begin those conversations around June 2027.

In the meantime, Jaxon’s school is raising funds for a new inclusive playground & disability equipment that will benefit all of its students. Jaxon will be taking part in the Colour Fun Run in August, and if you’d like to support both Jaxon and his school, we’d be incredibly grateful. Every contribution no matter the size, helps provide opportunities, equipment, and resources that can make a real difference in the lives of students with additional needs.

Please see the link below:

https://www.gofundme.com/f/colour-fun-run-j4tg8/cl/s?utm_campaign=fp_sharesheet&utm_content=amp30-treatment-7&utm_medium=customer&utm_source=copy_link&lang=en_AU

I will share photos of Jaxon completing his first school run in our next bulletin.

As always, thank you for your continued love, support, and encouragement.

Lauren & Matt

Update from the Foss

JAXONS JOURNEY FUNDRAISER’S

EVENTS FOR 2026

Jaxon’s Journey Trivia Night

We are looking forward to presenting JJ Annual Trivia Night in 2027 BIGGER AND BETTER!!

We can also confirm that through MG that they will be the sponsor again next year for Jaxon’s Trivia Night. Great news which gives great impetus for the event next year!!

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 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.

VendaTreat Vending Machines on APM Group Projects

Venda has been a supporter of JJ Trust for several years. This company contributes funds to the JJ Trust Fund every 3 months. This ongoing support is an important part of the Trusts fundraising each year. Thanks go out to Mark and his team.

TRUST FUND

The committee is still motivated and committed to Jaxon’s Journey

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 July 30th 2026 was conducted at APM Group’s Project in Bentleigh

The main discussion took place around Young Jaxon’s new medicine (see opening from Lauren).

Huge thanks to all the volunteers who have worked so hard at the Summerset clean ups which involves removing rubbish, whipper snipping and ride on/tractor mower work on greenfield project sites which has allowed the Trust to fund in part to purchase the new car.

Big thanks to Summerset Aged Care for agreeing to allow this to happen on their sites prior to being developed. The last clean up was held at Chirnside Park. It was hard work but well worth it with John and the Paw Patrol and Paul with Bridie

Have spoken to RM (APM Group HSR) in trying to get a Bunnings Barbeque in the near future. The Trust relationship with South Wantirna is paramount to the success we have achieved.

Looking forward to the following events to finish the year off in glory-

Tasty Trucks- Food vans coming to site, will discuss trying to get a similar deal to the vending machines.

Sunset Series

Client clean ups- ongoing

Ongoing work at PH’s property

Melbourne Marathon

Raffles (TV/footy merchandise) towards the end of the year

Merchandise-

Matt has organised some JJ Stickers for hard hats/cars and the like which will be available soon.

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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 Cashie’s for Jaxon’s Journey

We thank Summerset Aged Care for their participation in this fundraiser.

Also, thanks to the volunteers including the Paw Patrol, Nicole/John Howard, Paul Howard and Bridie Howard and Rod/Rose McInnes

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, AXE, LANTERN OR FOSS.