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  • Lauren

Jaxon's Journey Bulletin No. 17


Hi All,


Jaxon started school this year, he attends a specialist school in Seaford. The transition from kinder to school was a little hard for Jaxon. So, we started slow, short days and the school allowed Jaxon’s main support worker to attend with him until he was comfortable.

Jaxon now attends 3 days a week, he has built relationships with his teachers and classmates. We are so proud of him, and love hearing from the teachers that his little personality is starting to shine.



 

Jaxon picked up his wheelchair in February, a very bittersweet moment for us. To be honest I never thought we would come to needing a wheelchair. It made it easier that Jaxon loves his wheelchair and gets excited going in and is also getting close to pushing it on his own.

Sadly, we have noticed a decline in Jaxon’s gross motor, he seems to be weak in the legs and finding it hard to have the stamina to use his walker for long period of times. We discussed this with his Neurologist who said sadly it would be due to the constant seizure activity at night.

He still managers his weekly physio sessions and is trying his best as he always does.



 

Jaxon had another EEG in February to see if there were any changes, they also needed the most up to date EEG for evidence needed for him to qualify for a new medication.

Unfortunately, Jaxon had 3 seizures that were visible and almost continuous seizures throughout sleep that were not visible. This makes sense to why Jaxon wakes a lot through the night, why he is always so tired in the morning and why he is struggling at physiotherapy. His brain is in a constant electricity storm. Not able to rest, not able connect new neurons to develop. It is soul destroying as parents to lay with him and feel him jolt every few minutes knowing its seizures and knowing there is nothing we can do to help him. Imagine not being able to do the simplest thing as sleep! It is cruel!

The neurology team have taken his MRI and EEG results to conference and have decided to go ahead with trialling the new medication. This medication is rarely used for children with Epilepsy. It is a drug used for tumours, but it is known to target Jaxon’s MTOR gene mutation.

We have everything crossed that this medication helps him as we are running out of options. We are 1-2 months away from trialling this medication.




To end on a positive note Jaxon continues to get up every single day, he is a fighter. He finds joy in the simple things of life.

He continues to laugh most days and reminds us to slow down and appreciate the small moments.

Thank you for your ongoing support.

Lauren and Matt




Update from the Foss 

 

JAXONS JOURNEY FUNDRAISER’S EVENTS FOR 2024 

 

Jaxon's Journey Major Raffle - drawn 28/3/24 


We are pleased to announce the winners of our raffle for Jaxon- 

  

1st prize – Samsung 75 inch TV, David Jones 

2nd prize - $200 Woolworths voucher, TC Hire 

3rd prize - $150 Bunnings voucher, Evan Willaims 

On behalf of Jaxon, his family, and the Trust Committee, we would like to express our sincere thanks to all who purchased a raffle ticket in support of Jaxon. 

$5,000 was raised which will go a long way to assisting Jaxon in his day-to-day happenings. 

  

Cheers! 


Jaxon’s Journey fundraising events- 


Jaxon’s Journey Trivia Night   

 

We are encouraging you to come along for a night away from the kids where you can help raise funds for the Jaxon’s Journey Trust whilst mingling with other supporters. Coordinated by Jaxon’s Journey Trust, the night will include a professional trivia competition, raffle prizes, a silent auction and best dressed competition prize. Food will be provided with drinks at bar prices. 


 WHEN 

 7pm Saturday, 13th July 2024 


WHERE 

Wantirna South Football Club Pavilion Walker Reserve, Tyner Road, Wantirna South 


TICKETS 

$50 per head Sponsored $450 per table (max 12 persons) if paid by Monday 1st July otherwise $500 per table. 


Pay into Jaxon’s Journey Bank Account- 

BSB: 083 004 

Account number: 882 736 692 

Or 

 

 

ATTIRE 

Each table can pick a letter and dress in that theme + decorate their table to it. A Prize is guaranteed to the best team! 


GREAT OCEAN ROAD MARATHON


Luke Delia APM Group favourite Site Manager is running again. This time he is running in the Great Ocean Road Marathon to be held on Saturday and Sunday MAY 18 & 19 2024. If anyone is interested in sponsoring Luke contact him or please contact Belinda at belinda.oden@apmgroup.com.au. All funds raised will go to the Jaxon’s Journey Trust. 

 

 

DISABILITY TRUST FUND  

Nothing to report  


AXONS 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.  

 


TRUSTEES MEETING 

Trustees meeting held on Thursday 2 May 2024 at Kew Gardens Aged Care. 

Main issues discussed were future fundraising activities for 2024, including upcoming Trivia Night, The Great Ocean Road Marathon, another major raffle and more to come for 2024. 

Next meeting due Thursday 8th August 2024. Venue TBC.  

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  

“Cashies for Jaxon’s Journey” has started.  

Recent Cashies for Jaxon’s Journey 

Foss and Lantern recently laid down  60 meters of carpet tiles in a house. A sizeable donation for the work was put into the Jaxon’s Journey Trust. We thank the people involved for their donation.   

  

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  

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