Hi All,
We hope everyone had a lovely Christmas and a Happy New Year.
Sadly, Jaxon had a few seizures over Christmas and during the first few weeks of January. We have requested for him to have an overnight EEG at the Royal Childrens Hospital as we believe Jaxon's nocturnal seizures have gotten worse. Even when we don't physically see a seizure we know that his brain is sparking countinuesly which makes it impossible for his brain to rest. This makes it hard for Jaxon to wake up refreshed and continue to develop.
Its been a hard few months watching Jaxon struglle every day due to seizures and him being so tired and also becoming unwell on top of that. We have had a alot of sleepless nights.
Through all this Jaxon continues to fight everyday and he is my motivation. He gives me strength to get through each day.
Epilepsy has channged our lives and I dont think there is anything this cruel in world than watching your child endure a seizure knowing there is nothing you can do to stop it.
We will keep going as we have for the last 4 years, we wont give up on trying to find seizure freedom and improving Jaxon's quality of life.
Jaxon has a busy year ahead with therapy appointments. He has weekly appointments for Physiotherapy, Speech and Hydrotherapy.
We have also been lucky enough to get a weekly appointment at NAPA (Neurological and Physical Abilitation centre)
Jaxon's first few sessions at NAPA Melbourne.
Jaxon working hard on independent standing!
Working on standing up from sitting, we are working on traning the brain connecting new neurons. All these little steps will help Jaxon achieve his goals.
Thank you for all the donations, we have been able to use the funds for an intensive program which runs from Monday to Friday. Two hours a day of Occupational Therapy and Physiotherapy through NAPA which begins next week.
We are excited about this opportunity and look forward to sharing Jaxon's progress in the next bulletin.
We have purchased a family season pass to Jaxon's favoutite place, Gumbuya world.
There are so many things Jaxon's can do at this park, which is really nice for him.
The smile on the tain ride says it all!
January 31st 2022 - 4-year-old Kinder.
We are lucky to have a centre that is very accomdating to Jaxon's needs which has made this process alot easier.
Very proud moment seeing him ready for his first day of Kinder!
Thanks you
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 IS GOING FULL STEAM AHEAD.
PURCHASING OF MERCHANDISE
IS NOW AVAILABLE THROUGH JAXONS JOURNEY WEBSITE.
HIGHLIGHT DONATIONS FROM FIRST RATE PLUMBING, BRIXNBLOX AND TST BRICKLAYING- VERY GENEROUS AND PROUD TO BE WORKING DAY TO DAY WITH THESE COMPANY’S.
TRUSTEES MEETING
Main actions from the recent Trustees meeting-
Auction items are still going and Lauren will be in charge of both the website and auctions. BO as backup if required.
Merchandise- BO to do pre sale of Jaxons Journey branded hoodie/LS shirt in grey.
Fundraising- LD, MD & MG are going to combine a Run for Jaxon- details to be realeased soon.
Car rally from HQ to Marcus Worn Farm to be held April-may 2022.
Bank account to be reconcilled quarterly.
APM Group to purchase portable EFTPOS from Officeworks- BO to action
Next meeting Thursday 28 of April 2022.
If anyone requires a copy of the meeting minutes please contact Belinda at HQ.
CURRENT FUNDRAISING
The following is a list of new products that will be available in the near future for fundraising to Jaxon’s Journey Trust-
Truck Caps
Baseball Caps
Bucket hats
All Jaxons Journey products are available on APM Group projects, the website and HQ (Belinda 8413-0000).
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
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