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Jaxon's Journey Bulletin No. 3

Hello All


Since our last update we have started the trial of CBD oil to help control Jaxon’s seizures. There are different forms of CBD oil and it’s taking a few trials to work out the right dosage and strength. We had an appointment with a GP who specialises in CBD and he was able to organise a script for Jaxon. Unfortunately the first CBD oil we tried did not agree with Jaxon so we decided to stop that one and trial a raw form of CBD oil. We are still using the raw CBD oil, we have noticed a slight change in his cognitive abilities which has been amazing to see. It’s still early days and unfortunately he is still having seizures during the night.


Our last Neurology appointment was confronting, Jaxon is ticking all the boxes for developing Lennox-Gastaut syndrome which is a severe and life threatening form of Epilepsy. He has been referred to a genetic research program in the hope to find a genetic cause to help treat this awful and debilitating illness. We are holding tight on any discussions regarding brain surgery until all genetic results are back.


Jaxon has been doing well with Physiotherapy, there are concerns about his weak core muscle tone. Jaxon will need to wear his AFOs (Ankle-foot orthoses) to help him be confident on his feet in the hope that one day he will take his first independent steps.


Unfortunately due to the current lockdown Jaxon hasn’t been able to start Hydrotherapy as yet.


Through all the struggles Jaxon faces each day and night he still continues to find a way to smile and laugh. He has the best personality and is the strongest person I know. He gives everyone strength.


Milo has been doing very well at training, he is learning new things every day and has formed a beautiful connection with Jaxon.


Once again thank you to everyone for your ongoing love and support for Jaxon.


Some pics attached of Jaxon and Milo


From Lauren & Matt & Family








DISABILITY TRUST FUND


In regards to Jaxon's Journey Disability Trust with Centrelink we received notification that all trustees had to complete statutory declarations in order to satisfy Centrelink requirements. That now has been finalised and we are now awaiting Centrelink’s final recommendation to set up the bank account with NAB for Jaxon's Journey.


Also thank you to Belinda for collating and looking after the financial spreadsheet for the Trust.



PAKENHAM RACE DAY FUNDRAISER


Unfortunately the COVID-19 lockdown caused the postponement of the fundraiser to be held at the Pakenham Race Club. This event has been rescheduled for Tuesday 27 August 2021. All seats were taken up quickly so we’re hoping everyone who put their hands up last time will be available again.


The Trustees will be auctioning off a number of items on the race day so make sure everyone has their pockets full.


At this stage we are looking forward to a “special guest” appearance on Race Day.


As per today 16/08/2021 it is looking highly unlikely that 27/08/2021 race day will go on. We will keep all parties up to date concerning the change of dates again.



TRUSTEES MEETING


APM Group first trustees meeting was held last Thursday the 12th of August at HQ.

MD opened meeting with comments regarding fundraising that all donations, funds and monies from the trust will be available for Matt and Lauren and whatever they need to support themselves and Jaxon.


If anyone requires a copy of the meeting minutes please contact Belinda at HQ.



CURRENT FUNDRAISING


APM Group project teams have currently sold $3000 worth of beanies and approx. $1900 worth of stubby holders.


Soon the NEXT 100 Pom Pom beanies will be available on all sites for $25 each soon.


The beanies are being sold at a fast rate which is a credit to all APM Group Project Teams.


Also we now have a Brett Harvey games record signed jumper for sale/auction and a recent

Melbourne Storm signed player jumper which is framed to auction (thanks go to James “the

labourer” Oden for his efforts in acquiring the storm signed player jumper).


KEEP UP THE GOOD WORK


IF ANYONE HAS ANY NEW FUNDRAISING IDEAS PLEASE CONTACT


B, TUBBY, DELILAH, ECTOMORPH OR FOSS

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