A little battlers fight with Spinal Muscular Atrophy

16/08/2024

You little champion 💪🏻

The impacts good healthcare can have on regional kids.

07/08/2024

Just a little glimpse of where we’ve been hanging out the last few weeks 🥰
It’s been such a rewarding experience connecting with other families and watching our kids create friendships and smash their goals with the NAPA Centre 🥰💪🏻❤️

06/06/2024

Another lot of muscle juice in the bag! 💪🏻

This was our second time doing it under GA with CT guidance and Kalarny handled it like a champion! He was even discharged 4hrs after; just goes to show how incredible medical science is and the care at Sydney kids is second to none always taking such great care of our beautiful boy ❤️

Tomorrow we’re back at the hospital bright and early to be casted for new AFOs and back brace, I wonder which design he’ll choose this time 🤔

24/03/2024

Check out a what this little superstar has been up to!

Kalarny

He's already featured in a campaign for jeans for jenes day (see link below)

He is adorable and cheeky and I want his mum to be my new insta BFF!

Kalarny obvious loves the camera and the camera loves him right back!

A dream to shoot and even better to spend some time with your mum and dad and learn more about your journey but moreso just to learn more about you.

What an incredible little boy and even more amazing family, we spoke so much and so many things resonated, it was a pleasure to have you all on set!

You can book Kalarny to represent your brand, business, product or service ✌

Slide into my DMs or send an email to hello AT disinfluecner.co

Image Description. Kalarny in a white short in his wheelchair for his portfolio shots for disinfluencer. Image Description also in alt txt.

https://www.cmrijeansforgenes.org.au/get-involved/real-stories/2022-jeans-for-genes-kids/kalarny

21/03/2024

What a whirlwind 48 hours, unfortunately came down with gastro Tuesday night poor little guy couldn’t keep anything down resulting in his blood sugars to drop significantly low, people with SMA don’t have the reserve like others and suffer with hypoglycaemia.
He was then ambulanced to Dubbo hospital where last night they finally were able to get him to keep some fluids down and get his blood sugars under control. This morning he is back to his bright and bubbly self asking to go home! Hopefully once we work our way back to his full feeding regime we’re out of here!

15/03/2024

Sending so much love prayers and strength to our little bestie Jon. He is currently in ICU very sick fighting for his life. Please if you have time whether you are religious or not say a little prayer ❤️

No child should ever have to go through this, SMA is so so cruel!

29/02/2024

Rare Disease Day 2024

Kalarny is 1 in 10,000 born in Australia with Spinal Muscular Atrophy (SMA).

🧬SMA is a genetic condition that affects the nerves that control muscle movement (the motor neurons). In someone with SMA, the motor neurons in the spinal cord do not work properly. The messages that the brain tries to send along these motor neurons do not get through to the muscles. This causes the muscles to become weak and damaged. Over time they waste away (atrophy).

SMA affects muscles throughout the body, including:

💪🏻the muscles in the shoulders, hips, and back – these are often most severely affected

💪🏻the muscles for feeding and swallowing

💪🏻the muscles involved in breathing and coughing

💪🏻these muscles are involved the person may be more prone to pneumonia and other lung problems. This is why we ask people to stay away when they are sick.

🧠A person with SMA’s intellect and senses are not affected by the condition. So please do not treat them any differently.

💉There is currently no cure for SMA, but there are now three different types of treatment available- the sooner the disease is picked up the less chance the muscles have to begin atrophying. Thankfully now SMA can be detected on the newborn heel prick in some states.

Kalarny was extremely lucky to one of the first to access treatment in Australia when he was diagnosed in 2017 and accepted into the drug trial for nusinersen. Without treatment we would not be enjoying the joy that our beautiful boy brings him and those close to him everyday 🩵

14/02/2024

It’s back to school and off to a cracking start for year 1 🎉

18/01/2024

It’s been a crazy week!

Aarons first trip he stayed home and worked holding the fort and Aunty Paydie stepped in. We arrived for our planned muscle juice but unfortunately this time access wasn’t successful, it was a big day full of mixed emotions. Some things just never get easier even if we have been doing it for nearly 7 years!

We have caught up with a few of Kalarny’s other team members in between had our yearly cardiology review (thankfully all went well) then today our brave little man had his muscle juice under CT guidance with a general anaesthetic. We are having a sleepover in icu to keep a close eye on him post anaesthetic but hopefully discharged tomorrow home! But first I think a trip to the toy store is warranted for him being so brave as always! 🩵

28/12/2023

Merry Christmas 🎄

11/09/2023

It’s that time again! We’re in Sydney this week for a jam packed week of appointments and an MRI under general anaesthetic to check Kalarnys scoliosis and make sure there’s a safe space for them to insert the rods when the time comes.

Today was muscle juice day, and can you believe our little superstar was the 500th dose of spinraza they have administered in the medical day unit at Sydney Childrens Hospital!? How amazing is it that we get to access such amazing health facilities!!

04/08/2023

Jeans for Genes day 2023 🥰

Kalarny’s first year spending it at school sharing awareness on how it can literally save a child’s life by donating towards the amazing things they do.

He took his poster in to share with all his friends, and how sweet is this photo of him with his lovely teacher and special support aide ❤️🧬👖