I've created this page because I want to make a difference to our little hero Josh Brass
here is his story told by his mum Abbi Brass
Hello Annabelle, Geoff,
It was so lovely to meet you all on Saturday.
Thank you all so much for contributing to Joshua’s scholarship 🙏🏼
Let me tell you our story and where we are hoping to go!
I have to apologise it’s a novel and the house is super quiet so I can actually take the time to write it!
Morgan and I moved to Australia in 2007 from NZ.
Young and carefree we thought the world was our oyster.
Deciding that the Gold Coast was for us so we worked as many hours as we could and socialised just as much 😉
I was 24 when I fell pregnant with Josh. Overjoyed and excited we went to every ultrasound hoping to catch a peek of his gender.
Since the first 2 scans were normal we asked a close friend if she wanted to find out the sex of the baby with us! Of course she did.
23 weeks I’m lying on the bed and the sonographer is checking over everything when she just up and left the room.
We were all stunned.. seriously what the? Where’d she go? About 5 mins later- felt like a life time.. another lady appears with our original lady and takes over.
She says - your baby has Spina bifida. Oh and it’s a boy. You need to see your gp urgently.
We were gobsmacked.
We left there in shock.
I couldn’t see my GP for a few days. So I called in sick and shut all the curtains and cried.
When I did get to the gp- she urgently referred me to Maternal Fetal Medicine at the Mater where I was seen straight away.
I had bloods, amniocentesis, mri and so many scans I lost count.
Our doctor told us it wasn’t Spina Bifida but most probably caudal regression Syndrome/ Sacral Agenesis. He wasn’t certain.
He did sit me down and went through our “options” with our baby.
It was closer to 25 weeks when the “options” were mentioned- I was highly disgusted that - that was even an option. If we thought we couldn’t handle him maybe adoption. End of story.
Anyway 35 weeks my waters spontaneously broke and josh decided to make his appearance early.
Sure enough when he came out he was a mess.
At the time of birth he had a hole in his heart, 3 hernias, 1 kidney, no tail bone, severe scoliosis, no knees, dislocated hips, shortened femurs and club foot.
He was put under anaesthetic within a week of birth so the could get clear scans and decide what to fix first.
The hernias were all surgically repaired and his feet were put into plaster casts.
I was discharged after day 3 and he had to stay at the Hospital while I was at the Ronald McDonald house for 2 weeks.
When we got home the sudden realisation hit me... this is going to be hard.
All of our family live in NZ. Our friends are not family orientated. We were booked in for 2 appointments at the hospital a week! GC to BRIS with a newborn is hard work but twice a week and massive hospital days! Usually 1 appt will take around 4-5 hours. Then hospital parking...
Anyway we managed it.
We slowly built up a brand new support network.
Just when things would look up for us, Josh would start running a fever and start spewing.
I didn’t understand what was happening. Panadol didn’t fix the fever so after a terrible night we went to A&E. Found out he has a very nasty UTI and he had to be hooked up to iv antibiotics. This went on pretty much every 3 weeks for just under a year till we were told he needs to be catheterised.
Every 4 hours we need to drain his urine because of his shortened spinal cord- he doesn’t know.
After a year Josh was no longer entitled to hospital Physio on a regular basis and we weren’t allowed to access disability services QLD or Montrose or even carers payment. So this stressed us out a lot financially.
After a while I realised I didn’t need a physio to help him. I’ll just use common sense. Small things like covering his eyes and playing with his legs helped increase awareness and transferring from sitting to pulling to stand.
Time went on and Josh got stronger- a lot stronger. We learnt how to manage his disability.
He started private personal training lessons at 5, skate park at 4 and tried every sport you can think of.
We have been very blessed financially, his last two wheelchairs we have managed to fundraise for and Morgan has a stable job so things like catheters and training we have budgeted for.
The scholarship will help so much, knowing his training is covered and it can help with travel expenses within Australia.
He has also been very blessed to be a part of an organisation in America called the Challenged Athletes Foundation. The last 4 years have paid for Josh and 1 adult to go over to attend training camps or Wheelchair Moto X championships.
In QLD he is unable to access any junior development camps due to his age so we have to take advantage of the American opportunity with both hands. We also go to Sydney in December to attend the Junior Christmas Camp. Kurt Fearnley and other Paralympions help coach and mentor the kids no matter their age.
Unfortunately QLD is just a little behind and he won’t be able to attend anything here till he is 12 😑
Our goal for Josh is to experience every opportunity.
Give it a good go. If he’s good and passionate about it we can continue to do it. Even if it means every day is full.
I also want him to embrace his more sensitive side. When we were living on the Gold Coast he was also doing singing and drama. Which he loves. Unfortunately we haven’t found anywhere local to continue doing it.
He has an agent in Melbourne and he has been cast in a photo shoot for a major bank, he has done a sea world ad and is now a chief toy tester for toys r us. He has to review toys and also do shoots for the company.
I hope this lets you in on our world 🌎
Well here we are now!
Any questions just fire away!
Have a happy day!
so there you have it we felt compelled to help Josh and his family out
please donate any amount you can