Hi All,
Jaxon's seizures have reduced over the last few weeks, we are hoping we have found the right mix of medication to give him some relief.
We got Jaxon's genetic results back after waiting over two years, they were able to find a gene mutation in Jaxon's genes he has 7% of a gene called MTOR which gives us the answer to why he has uncontrolled epilepsy, a brain malformation and severe developmental delays. This gene was not passed down by Matt and I. It was just pure bad luck for Jaxon as when his brain was developing in the womb it didn't kill off that 7% of the MTOR gene. When I heard this news I remember feeling relieved that there was nothing we could have done to prevent this, it was nothing I did during my pregnancy... but then I felt immense sadness for Jaxon, why him. Why does he have to live the rest of his life with this debilitating illness.
I guess I will always grieve the life I wished for him. We will continue working hard on his development and making many special memories for him. We know we will never have complete seizure freedom but we hope to at least keep them under control for him.
He has been doing well at therapy. We started a new 3 week intensive therapy program but unfortunately it was cut short due to Jaxon getting the flu. He still did so well and showed some great gains in the week and half he was there.
See video below of what Jaxon achieved, he amazes us every single day.
NAPA intensive June 2022
Earlier in June Jaxon was invited to a fire station (station 31) where Jason kindly gave Jaxon and Ryder a tour of the station, a ride in the fire truck and got to play with the fire hose.
We are so grateful for the time Jason and the team took to make this an extra special day for Jaxon, he was in his element.
At the end of May we decided to take Jaxon away for the weekend to Adelaide, he loved seeing the planes up close. He was so excited being on the plane, yelled out "more" when we landed.
Making these memories are so special to us, seeing Jaxon happy and enjoying his life is what makes us as parents happy.
A big thank you to my Parents, Trish and Neil who drove up from Melbourne to babysit Jaxon so Matt and I could go to the footy to watch Port Adelaide vs Essendon.
It was nice being away from Melbourne for a few days, having a break from all the medical and therapy appointments.
To end this bulletin Matt and I would like to announce that we
expecting a BABY BOY January 2023.
We are very excited and of course extremely nervous but most of all grateful to be able to add to our little family. This baby is such a special gift to us all.
Once again thank you for everyone's ongoing support and love.
Lauren and Matt
Update from Terry (Foss)
26th July 2022
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
PURCHASING OF MERCHANDISE
IS NOW AVAILABLE THROUGH JAXONS JOURNEY WEBSITE
TRUSTEES MEETING
Next meeting this Thursday 28 of July 2022.
If anyone requires a copy of the meeting minutes please contact Belinda at HQ.
CURRENT FUNDRAISING
Successful raffle of current 2022 Essendon Football Club signed and framed football players jumper.
All projects now have a square reader to be used for selling merchandise on site. So far this has been a very good initiative by the trust and will make fundraising easier in the future.
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PAKENHAM RACE DAY FUNDRAISER
APM Group has renewed the sponsorship package at the Pakenham Racing Club Construction Day for 2023. We thank the four horsemen for their ongoing generosity.
This will allow the Trust plenty of time to accumulate auction items for next year’s event.
MERCHANDISE
Another batch of JJ merchandise is due this week. On arrival this will then be distributed to all sites for selling the “little man’s items”.
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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