Tobias Duchenne's Journey

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

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!

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

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

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

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❤️

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

Donate to Apryls Much Needed Life Changing Surgery, organized by Shelby Lock 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

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❤️

Please keep sharing ❤️

Donate to Our family's Duchenne battle, organised by Lee-Anne Stephens Our family is fund-raising for our family member Tobias, he's 5❤️, my sister and her fa… Lee-Anne Stephens needs your support for Our family's Duchenne battle

Ready to keep adding more today.

Hit the lakes this morning as well as many online❤️
May have contacted a current affairs as well🙄

Keep sharing please

https://www.gofundme.com/f/our-familys-deshuns-battle

I got some good news,
Tobias is clear of scoliosis for now

The dr is in support of him being signed up with make a wish and starlight foundation too

Hi everyone

Tobias had his scoliosis assessment but we don’t have any results yet

His paed is also applying for an exemption to trial him on deflazacort as the prednisone is making him have nasty mood swings and he’s been getting fairly aggressive ( it’s not his fault but I have 5 other kids at home so we need to find that safe point with medications for all including Tobias), I’ll post the scoliosis update when I get results

Tobias Duchenne's Journey

Donate to Our family's Duchenne battle, organized by Lee-Anne Stephens Our family is fund-raising for our family member Tobias, he's 5❤️, my sister and her fa… Lee-Anne Stephens needs your support for Our family's Duchenne battle

Hi everybody

I just realised I forgot got an important update.Tobias turned 6 in February , my baby is growing so fast

We have an appointment with his paediatrician on the 13th of this month in regards to my noticing a slight curve in his spine and his inability to stand up straight without him either near falling backwards or having to have one foot back to steady himself , I got him to stand against the wall in most of the photos so as to brace himself for balance and put a ruler to show the curve , I’m concerned he may be developing scoliosis ( I will update what his paeds thoughts are on assessment) as you can see his calves have gotten bigger too , he’s starting to need more help to get into the car now but he’s still trying to do this himself to maintain his independence ( I’m so proud of him for that🥰)

Thankyou for being apart of his journey and to everyone who has and will in future donate or even just share ❤️

Hi everyone sorry I haven’t posted for awhile. I’ve been trying to take time to take care of my mental health as I haven’t really had a chance to go through the process of grieving properly plus I have been sick on and off for a while

Tobias has an appointment with the eye clinic coming up soon. I just have to organise a time.
I’m also trying to organise physio and or muscle exercises as I have found that 80% of the time to tobias is walking around on tiptoe, he has been tiring out a lot lately so as a precautionary measure I’m going to try to organise a mobility aid in the next few months for him as his not able to run or walk long distances any more without saying his legs hurt , I have a strong feeling he is going to go downhill a little and become Less mobile over the next two years ( I’m really anxious just thinking about it) I guess only time will tell

I’m off to bed now , but will post again soon , thankyou for following his journey 🥰

Hi all it’s halee ,

I heard back from the clinic in Sydney , they want to see Tobias every October until things progress,

We also found out that my mother is not a carrier so the mutation either started from me or it came from my bio fathers side but we have no contact with him so inheritance of genetics from his side will most likely not ever be known

the genetics team have asked that my older sisters be checked incase of gen skipping on my mothers side , they have also organised for my 2 older girls to be tested on the 19th of this month , I’m praying I haven’t passed it on the them as well

Well someone has apparently reported this page , I don’t know what the violation is as it doesn’t state 😔, trying to work out if it’s a scam

CORRECTION: I don’t have duchenne , I’m just a carrier . I misheard the genetics lady

Hi everyone. I’m just popping in to do an update , a few weeks ago I did genetic testing to see if I was a carrier , I got the results today , I’m a carrier of duchenne , meaning I need to keep an eye on my heart and get my mother both sisters and my other children tested as well , im not feeling the best knowing that I could potentially have passed it on to my 5 daughters , as most are aware female pass on is very rare but there’s still a 50% chance ( the main concerns for girls is heart condition and 1-2 other minor ailments -I’m sorry I can remember the others )

There is some light to this , we flew down to Sydney last week and spoke to the Neurogentics team and the was talk of trying to get Tobias into an exon skipping therapy trial , the trial it’s self has just closed but they were going to see if he could be added late , if he gets in the treatment is weekly or monthly injections, im at a bit of a loss atm due to being unsure if Darwin can accommodate this , if he gets in and they can’t do it up here we may have to relocate interstate , it scares me as theres 13 kids to think about in all of this and I don’t want to seperate them more so because they have just lost their father and this will affect them more 😥

Off to Sydney with mum to check out the Duchenne's clinic.

On Monday the 25th September With heavy hearts we said goodbyes to Tobias’s father Gary .

Gary fought a long hard battle but in the end it was just too much for his body to handle, he’s no longer in pain .

Gary will be dearly missed by all ❤️❤️❤️❤️❤️❤️

Hi everyone I’m sorry I haven’t been posting more, things have been touch and go of late , Tobias’s father (Gary) was diagnosed with CMML around 2 years ago which progressed to CML , it has now progressed beyond return and the drs said he has 12 months or less to live , he’s currently in hospital with pneumonia and has contracted a secondary infection , im a little emotional and very scared for him right now

I got a phone call from the duchenne clinic in Sydney today , they have made an appointment for the 25th october for us to fly down ,

I will post more updates as soon as I can I just need to be mentally present for Gary and the kids right now , thankyou for understanding 🙏🏻