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Jaxon's Journey Bulletin No. 1

Hello all


Just an update on Jaxon and the trust fund and how that is all tracking!!!


So since the last update Jaxon has spent a total of 7 nights in the Monash Children’s Hospital and then on to the Royal Children’s Hospital because we could not control his seizures again. The medicine seems to work for a few weeks then it doesn’t which then leaves him very vulnerable to seizures which were getting into the high 50’s per day some days.


At a recent neurosurgery conference it was discussed Jaxon may be a candidate for a left hemispherectomy (disconnecting the left side of his brain) to reduce the seizures. We are hoping to get his seizures under control before going down that path. As that surgery comes with some very scary risks and outcomes.

He is at high risk of developing Lennox-Gastaut syndrome (LGS), which means every seizure he is having brings this horrible syndrome closer by the day. So it’s critical for us to try and stop as many seizures as we can. We are now on a wait list to try medicinal cannabis.


The opening of the trust fund is the next battle with Centrelink as it’s taken them two months to finally call us after multiple calls at our end to ask us to prove that Jaxon actually has something wrong with him. This may take another month or two once we have proved his disability.


When this does go ahead the first thing to be purchased from the trust fund will be seizure night camera which will record when Jaxon is having seizures during the night, then Lauren and Matt can review the footage and know what type of seizures he has had, as there are so many different types. This camera could be life saving.


So again thank you to all the people who have donated and done events and fundraisers on their jobs and supported us through these tough times not having that burden is half the battle and it does not go unnoticed, so thank you all from the bottom of our hearts!!!!!

From the McInnes family



DRAWING OF FUNDRAISER RAFFLE AT BOLTON CLARKE




People


Jaxon’s Journey raffle was held this morning and the results are as follows:

1ST PRIZE - Total tools Braeside 76l esky with legs and wheels value $300

WINNER- FRANK GIANNELLA (MUREX RENDER) TICKET NUMBER 109

2ND PRIZE - $150 Bunnings voucher- TOM WINTER (HANMAR FLOORING) TICKET NUMBER 024

3RD PRIZE - $50 Bunnings voucher - TY BUTLER (ALFIE FIRE) TICKET NUMBER 030

We want to thank everyone at our jobs Bolton Clarke (1259), Causeway Hotel (1260), Chirnside Park (1274), and Elizabeth Street (1267) for contributing to the $1500 raised through ticket purchases.


Special thanks to Bosustow, The Wolf, Delilah, VP, K2P, Wiggy and the rest of the team for their fundraising efforts at this project.



DISABILITY TRUST FUND


Special thank you to the anonymous donation of $10,000 from the Four Horsemen.


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 now 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.


Thanks to Simon, Jason and Anthony from Domain Concrete for their support.


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.



CURRENT FUNDRAISING


Please see attached Flyer produced by Lauren McInnes for the sale of Beanies for $20.


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


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


KEEP UP THE GOOD WORK


IF ANYONE HAS ANY NEW FUNDRAISING IDEAS PLEASE CONTACT


B, TUBBY, DELILAH OR FOSS

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