Hi All,
Jaxon attended a 3 week intensive therapy at NAPA in June. He worked really hard, we worked on building strength in his ankles and legs so he did most of the session without the support of his AFO’s (Ankle-Foot Orthosis). He used the Thera Togs which is an orthotic undergarment that helps improve postural alignment and stability, movement skill, precision and joint stability. We worked hard on stepping practice, stepping down and up and balancing. While we did see some small gains, Jaxon wasn’t going as well as he had in the past. He fatigued easily and was struggling with some of the exercises.
In true Jaxon style he got up and did the best he could every day.
See below video of Jaxon completing some of his sessions.
We had a wheelchair tral and Jaxon was able to pick a wheelchair that will best suit his needs. Jaxon is outgrowing a pusher and will need a wheelchair. This was a confronting appointment and came with mixed emotions.
Jaxon made it a little easier he got so excited to see the big wheels and loved crusing around the room.
We purchased a disability swing for Jaxon through the fund, this is something we have been looking at for a while now. To see the joy on Jaxon's face was priceless. It is his favourite thing to do outside (besides starting up the lawn mower) he is safe in the swing and it helps with regulating his emotions when he is having a hard day.
Again this is something we would not of been able to gift Jaxon if we did not have the fund. Thank you to everyone who has helped raise funds and to those who have donated, you have made Jaxon extremely happy.
At the end of June Jaxon was admitted to hospital for an overnight EEG to record the electrical activity in his brain. He handled this procedure so well. Being confined to the bed for over 24 hours.
Sadly, the results were not good. The EEG showed he is having a seizure every two minutes, these are sub clinical which means they are not visible to us. This explains why we have seen a decline in his quality of life. He is extremely tired, complains he is sore and struggles with therapy. There is no time for his brain to rest.
After we got these results, it made sense to why he struggled so much in his 3-week intensive.
It breaks our heart that he is suffering and there is not anything we can do to fix it.
We were given two options, to trial a drug that is usually used for cancer patients so you can only imagine the side effects. Or to see if we can operate, brain surgery. Disconnecting part of his brain, which also comes with risks and more impairment.
Jaxon will undergo an MRI on the brain in October so they can get an updated picture of his brain and to see if he is a surgical candidate.
The doctors are seeing if this drug is safe enough for him to take as it is not used for children with epilepsy, but it may help treat his gene mutation which has caused his epilepsy. To use this medication they need approval by a board of doctors.
We are faced with some big decisions, decisions we should not have to make but we must in the best interest of Jaxon. If only Jaxon could tell us what to do.
Jaxon is an inspiration to us all, he still gets up every day and is able to laugh and enjoy the little things in life. I see him trying so hard to learn new things and to enjoy the days, but I also see him suffering daily which is so heartbreaking.
Thank you again for all your well wishes and support during this time.
Lauren & Matt
Update from Terry (Foss)
JAXONS JOURNEY MEMORIBILIA FUNDRAISER SILENT AUCTION BEING HELD AT APM GROUP PROJECT BOLTON CLARKE
Jaxon’s Journey fundraiser is being held at APM Group Bolton Clarke Project at Bundoora.
Two items of memorabilia will be on permanent display at Bolton Clarke Bundoora. The items are framed jumpers with signatures from AFL Legends Dermott Brereton and Kevin Sheedy.
Winners were drawn and notified on August 3, 2023.
Essendon Legend Kevin Sheedy signed jumper won by-
Matt Hobbs APM Group. Congratulations Matt enjoy!
Hawthorn Legend Dermot Brereton signed jumper won by-
Stuart Weinman Robust Australia Pty Ltd. Congratulations Stuart enjoy!
JAXONS JOURNEY MARVEL STADIUM FUNDRAISER SILENT AUCTION WAS HELD AT APM GROUP PROJECTS IN OFFICER, SKYE AND CRANBOURNE.
TC HIRE donated 6 seats per game over AFL Round 21 dated 04/08/2023. A silent auction was conducted at APM Groups 3 SES projects over a period of 3-4 weeks. The winners were announced. Thanks to Ted from TC Hire on his wonderful donation.
Winners
Essendon vs West Coast- Adam Pavic from Pavic Roofing.
Winners
St Kilda vs Carlton and Western Bulldogs vs Richmond- Countrywide Constructions.
AXONS JOURNEY MEMORIBILIA FUNDRAISER RAFFLE BEING HELD AT APM GROUP PROJECT BOLTON CLARKE
Jaxon’s Journey fundraiser is being held at APM Group Bolton Clarke Project at Bundoora.
Three items of memorabilia will be on permanent display at Bolton Clarke Bundoora. The items are framed jumpers with signatures from Dustin Martin Richmond, St Kilda team and Melbourne team. 60 TICKETS AVAILABLE FOR EACH JUMPER AT $25 A TICKET OR 3 FOR $60.
Tickets still available at this stage contact Luc Biazzuso on 0419 222 142
Winners will be drawn and notified on Thursday the 28th of September 2023.
DISABILITY TRUST FUND
Financial Reconciliation report has been finalised.
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.
TRUSTEES MEETING
Trustees meeting held on 24/08/2023 at Cranbourne.
Main issues discussed were future fundraising activities for 2024, Bolton Clarke landscaping and lawnmowing monies has now been reconciled, memorabilia still available and more to come for 2023 including site barbeques and the Melbourne Cup Sweeps.
Next meeting due Thursday 24th November 2023
Venue TBC
Merchandise- To all APM Group people can we make a concerted effort to try and sell all current merchandise available on sites.
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
If anyone knows of someone who needs some work done contact MG/Foss.
Looking forward to Christmas 2023 to continue 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