Tobias Duchenne's Journey

19/07/2025

Guess what everybody we found a new car within our current amount plus Halee's saving over the last year!!!!! .

It’s a 2015 Kia carnival , I’m just sorting insurance and registration beyond what the car yard put on and transfer and we are already on road.

Thankyou all soo much for your contributions sharing and help in general to achieve this.

Our family is absolutely stoked and will never in a million years be able to express just how thankful my family and I are , we love you all ….

Moving forward i will leave the go fund me open for 2 more weeks and then will be closing it.

Again thank you to all who contributed and the awesome community spirit involved❤️❤️

22/11/2024

Hi everyone

Tobias started on the deflazacort a few weeks ago , hes doing ok on it so far with a few little hiccup here and there, he’s still as cheeky as ever though 🙃
As he gets bigger he is complaining of more leg pains and is now walking on top toe all the time , we are still waiting on physio for him And his new bedtime footwear

Deannah and Tatiana did the genetic test for DMD this week , we should get the results in the next 4 weeks ,

I’ll post more updates as we have them
Thankyou so much for all over your support 🥰

Here’s a photo of Tobias with A couple of his sisters

29/09/2024

Tobias saw his cardiologist last week , things are looking stable with his left heart valve , there’s been no size or weakness increase so he’s staying on the same dosage for his medication, the dr did say tobias will continue to have yearly check ups to stay on top of any changes or potential risks, we are still waiting on news of his exemption to trial deflazacort instead of prednisone, I will let you all know as soon as I find out what’s going on ,

thankyou for all of your ongoing support , as much as I hate asking for help I’m glad to see so many of you have our backs ( mainly Tobias and the kids backs )

Much love from our little family to yours 🥰

09/09/2024

Hi everyone , I’m sorry for not posting this earlier , Tobias older sister deannah had an MRI on the 4th of this month and ended up being sent to ED with chest pains as we were about to be discharged from radiology , she’s ok now they did bloods ECG and other tests and everything came back normal ( just waiting on MRI results now )

I have accidentally misinformed you about Tobias next trip to the Sydney DMD clinic , it turns out I misread the letter and it’s every 2 years at this point and a visit from the specialist here in Darwin on the year in between , we saw the specialist last week - Tobias is now on 20mg of prednisone instead of 15mg , we also went to the orthotics clinic to sort fitted night orthotics to help with his calves ,

Tobias is due to see cardiology at the end of this month as well as get his eyes tested in either October or November ( I’ll double check) , we also have dental treatment that’s been ongoing for the last couple of months too

I’m am in the process of having him tested for ADHD and trying to sort hydrotherapy for him as well, I will keep you all up to date , thankyou for following, donating and sharing , much love from our family to you

24/08/2024

First time out and about with wheelchair use.

Tobias wheel chair arrived recently and even though he is still ambulatory he struggles with long walks.

Great use at the wildlife park today!

15/08/2024

Hi everyone

Tobias has been approved for a wheelchair and it should be here next week , it will only be used if long distance walks are necessary.
We are still waiting to hear back about his change of medication but I have been working with his OT for his behaviour and sorting other therapies , on that note I have read that children with DMD can also be diagnosed with ADD/ADHD and I am wondering if it could be a mix of the medication and that ( having being diagnosed with ADD myself I can see the similarities in behaviour).

We are due to fly back down to Sydney to see the duchenne clinic in October ( no dates have been set yet but I will update on that when I get confirmation ) the drs, nurses and staff at Westmead children’s hospital are wonderful people, I know a few of them from when Tobias older sister was being treated for retinoblastoma.

Our current car is starting to have more issues now and parts are being discontinued making it harder for me to replace , we still have a ways to go in regards to getting a new car ,
I don’t want to rely too much on donations as everyone has their own expenses. i have been trying to save money myself but im nowhere near what i need but if we can raise another $10-$15k I should have enough to source a decent secondhand car.

I keep forgetting to put this in the updates :
If any local businesses donate I am more then happy to put advertisements on the new car to say thankyou, show my appreciation and help boost your business , please contact me via Tobias’s page if you would like me to advertise for you ( my ability to advertise is unfortunately limited to NT based or online businesses as I’m in Darwin and don’t travel outside the state) , once I get the new car I will contact you to organise collecting the stickers

Thankyou all so much for all of your help so far , we love you all

05/08/2024

Hi all it’s been a rough day

Last night our sweet little dog violet took a turn for the worst and passed away This morning ( she was 12yo and loved by everyone ) I think she may have had a heart condition possibly heart failure, , the kids were there when she took her final breaths but it wasn’t my intention for them to see her like that as it was traumatic And very hard to take in , I was trying to get her into the vet but she just couldn’t hold on any longer , I’m making plans for her cremation and to get a copy of her paw prints , the kids all adored her and she was my best friend ,

My little violet crumble the kids and I miss you so much already ,

today is also my eldests birthday which makes it worse as I wanted her to have a good day , the kids are with their aunty and cousins for the day to try to lessen the blow and keep their minds off what happened ,
Please give me some time to fully process and sort everything then I will post our awaiting updates , thankyou , halee

18/07/2024

Hi everyone

Tobias is starting to have trouble walking long distances now so we are in the process of organising a manual wheelchair for days when it’s required

We are making awesome progress with the funding for a new car only $25k left to try and raise , I cannot express how much apreciation I feel for everyone who has donated and even just shared- thankyou all soo much you all have beautiful kind and generous souls ,

Again sorry for not posting regular updates things have been hectic with sorting appointments and therapies for Tobias and his siblings plus trying to find time for myself, sometimes having 6 at home is a little too much fun 😅

Many thanks again and Much love to you all , halee

24/06/2024

UPDATE- Today we visited Hot100 Darwin and got to see the station and have a great chat with Miss Jac Cowan to help us promote The gofund.me for Master Tobais.

As well as create some extra awareness of duchenne-muscular-dystrophy❤️

Master Tobias didn't really want to chat today and thats ok, he's 6❤️

Thank you team Jac❤️

19/06/2024

Sharing another family's gofund.me.
They could use a little help too❤️

We need YOUR support! Apryl, an incredibly strong 7-year-old girl from Darwin, sh… Shelby Lock needs your support for Apryls Much Needed Life Changing Surgery

19/06/2024

13/06/2024

25%of our goal has been reached in a week, we are absolutely in awe of all the generosity from our local community.
Thank you to all have donated so far and thank you to all that have shared and continue to share❤️