top of page
Gradient
  • Lauren

Jaxon's Journey Bulletin No. 9

Hi All,


I can’t believe we are in May already. It’s been hectic here with medical and therapy appointments. Unfortunately, we have had a rough few weeks. Jaxon has had illness after illness, and we have had a bad run with over 2 weeks of uncontrollable nocturnal seizures.


Nocturnal seizures are seizures that happen while a person is asleep. They cause unusual night-time behaviour such as waking for no reason, jerking and shaking of the body. A severe seizure can temporarily shut down the brain, including the areas that control respiration. This can be fatal if a person is sleeping. Jaxon is at high risk of SUDEP (sudden unexpected death in Epilepsy) so as you can imagine the last two weeks Matt and I have been on constant high alert. Watching him closely and being there for him when the seizure happens. Imagine not being able to do a simple thing like sleep, his brain is in a constant state of chaos. When Jaxon is awake you can see it in his face how exhausted he is, he then struggles with therapy as he is just too tired. Sadly, we have had to cancel a few sessions due to him being too tired to function. Epilepsy is cruel and has taken so much away from Jaxon, and us as a family.

The Sam-I seizure camera we were able to purchase through the fund has been great, it keeps a close eye on Jaxon while he is asleep and alerts us when there is abnormal movement. Every morning I’m also able to watch back the footage and save the seizures to show his medical team.


CBD oil update: we have just started a new CBD oil trial through the Royal Children's Hospital. It’s still early days but we have everything crossed that this oil helps ease the seizure activity and improves Jaxon’s quality of life. With the fund and ongoing generosity of everyone we have been able to purchase this oil privately.


Jaxon completed a 3-week NAPA therapy intensive program in March. He did so well, completed all his goals and blew us away with his strength and determination. We have another 3-week intensive in June and can’t wait to see what his next achievements.




We purchased another trike for Jaxon to use at Kinder, it now stays at Kinder and is brought out when he is there. All the bikes at Kinder have pedals which Jaxon is unable to use. So now he can ride alongside his peers.

He was very proud to show of his bike riding skills to his friends and teachers.




Congratulations to Luke Delia for completing his first 70.3 Ironman. Luke took on 1.9km swim, 90km bike ride and 21.1km run. With a finish time of 5 hours and 36 minutes. Luke so kindly dedicated this massive achievement to Jaxon’s disability account. Smashing his $2000 goal. We were able to meet Luke at the finish line with Jaxon, what a great moment.

Thank you again, Luke.





Thank you everyone for your ongoing support,

Lauren and Matt




Update from Terry (Foss) -


DISABILITY TRUST FUND


Nothing to report in this space since we have been given the all clear from Centrelink- LETS HOPE IT STAYS THAT WAY!!


JAXONS JOURNEY WEBSITE

DONATIONS AND BIDDING OF AUCTION ITEMS ARE STEADY AT THE MOMENT. PLEASE LET YOUR FRIENDS AND FAMILIES KNOW OF THE WEBSITE WHERE THEY CAN BID FOR AUCTION ITEMS OR MAKE A DONATION TO A WORTHWHILE CAUSE. PURCHASING OF MERCHANDISE IS NOW AVAILABLE THROUGH JAXONS JOURNEY WEBSITE.



TRUSTEES MEETING


Main actions from the recent Trustees meeting held at HQ 28th of April 2022-

Auction items are still going and Lauren will be in charge of both the website and auctions. BO as backup if required.


Merchandise- TW has completed a preliminary stock take of all merchandise on APM Group projects. Currently there are $3,500.00 worth of merchandise available on site for people to purchase. To all APM Group people can we make a concerted effort to try and sell all outstanding merchandise.


Fundraising- PRC Construction Day is on again –Friday 3rd of June 2022. With 30 people allocated for the day thanks to APM Group generous sponsorship of the racing club. After not being on for two years this should be a chance for the participants to enjoy country racing and help Jaxon’s Journey.


Raffle of current 2022 Essendon Football Club signed and framed football players jumper will be available from the week starting Tuesday 14th of May.

BO to purchase Square Reader to be used at fundraising events for easier transfer of funds.


Next meeting Thursday 28 of July 2022. If anyone requires a copy of the meeting minutes please contact Belinda at HQ.


CURRENT FUNDRAISING


PAKENHAM RACE DAY FUNDRAISER

It’s back on. Pakenham Racing Club Construction Day will be held on Friday June 3rd 2022. APM Group are allowed to invite 30 willing participates for a great Jaxon’s Journey fundraising event. Invitations have already been sent and we look forward to a fun day with plenty of opportunity to raise valuable funds for the Journey. The Trustees will be auctioning off a number of memorabilia 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.

Raffle of current 2022 Essendon Football Club signed and framed football players jumper. 100 tickets at $25.00 a ticket starting next week. All tickets to be sold on APM Group projects and the winner to be drawn on Friday 10th of June 2022. Value of the signed and framed jumper is $800.00.



NEW INITIATIVES


“Cashies for Jaxon’s Journey” has started. If anyone knows of someone who needs some work done contact MG.


Looking forward to 2022 to continue to maintain all our support to both Lauren and Lantern.


KEEP UP THE GOOD WORK


IF ANYONE HAS ANY NEW FUNDRAISING IDEAS PLEASE CONTACT B, LANTERN, DELILAH, ECTOMORPH OR FOSS

40 views0 comments

Recent Posts

See All

Jaxon's Raffle - drawn 28/3/24

We are pleased to announce the winners of our raffle for Jaxon. 1st prize – Samsung 75 inch TV, David J 2nd prize - $200 Woolworths voucher, TC Hire 3rd prize - $150 Bunnings voucher, Evan W On behalf

Comments


bottom of page