Alara's Batten Battle - CLN6

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Alara's Batten Battle - CLN6

Alara's Journey With Batten Disease (CLN6)

22/01/2026

Yesterday, we had the amazing opportunity to get Alara into the beach at Fingal Bay Beach.

Thanks to lifeguard, Mark for sorting out the beach wheelchair and for being so accommodating.

13/01/2026

💪Experienced Paediatric Physio Needed💪

Alara is needing a new physio while our unicorn physio is on mat leave 😢

The physiotherapist must have strong experience in paediatrics; experience working with complex physical disabilities would be highly beneficial.

Alara's needs are complex, so it’s important we find someone who is skilled, confident, and experienced in this area.

Appointments before or after school would be ideal, and home visits would be a bonus.

Experience in writing detailed and comprehensive reports for assistive technology (AT) equipment and other therapy recommendations is essential.

We are in the process of starting with a provider in Bowral, but would prefer someone local if there is availability.

Please feel free to comment or message me with any recommendations.

Please share ☺️

19/12/2025

We don’t just love our children with special needs.
We live for them.

Our days are built around therapies, appointments, research, accommodations, and plans that most people never have to think about. Our nights are filled with worry, prayer, and hope that tomorrow will be a little easier for them. Our worlds revolve around making sure they have the best life possible, not despite their diagnosis, but alongside it.

We learn the language.
We memorize the acronyms.
We spend more time on the phone with doctors than friends.
We notice the smallest wins that others might miss.
We celebrate milestones that took everything to reach.

We advocate fiercely. Even when it’s uncomfortable. Even when it makes us “that parent.” Even when we’re exhausted and grieving the life we once imagined. Because no one will fight harder for them than we will. No one will speak louder when their voice isn’t heard. No one will protect their dignity, their access, their future like we do.

This life isn’t easy. It asks more of us than we ever thought we had to give. It stretches our hearts in ways that are both painful and beautiful. And while we didn’t choose this path, we choose them every single day.

We choose to show up.
We choose to learn.
We choose to push for better.
We choose to believe in everything they can be.

This is what loving a child with special needs looks like.
It’s all in. ALWAYS.

Chelsea Wasden Photography

17/12/2025

Well......We're still here.
Unfortunately due to Alara's low oxygen, we're here another night.
Stats are still fluctuating and when they're low, they're between 90 and 94.

They're much better this afternoon than they were earlier in the day. But as I'm typing this post, the machine is beeping away sitting at 92/93.

G tube is still going well and we've had lessons with the lovely stoma nurse, Alison as well as the Nurse Practitioner, Olivia.

I'm hoping we also have some sort of assistance back home.

📣📣So to my amazing Goulburn Base contacts... Please tell me we have a stoma nurse with Paed experience 🙏😅

16/12/2025

🧬 We got our G-Tube! 🧬

Yesterday, Alara went into surgery to have her Gastrostomy tube (G-Tube) placed.
Surgery went well with no issues, however Alara did take a long time to wake up afterwards.
Prior to surgery, they gave her midazolam to calm her down in order to be able to get her to sleep without any issues. Without this, Alara would have for sure fought the nurses and worked herself up even more.
It seemed as though she was enjoying the pre meds a bit too much 😂
This, along with the fact that she had never had anaesthetic before, could have contributed to her sleepiness.
As her vitals were all stable, the nurses weren't concerned and we were able to move to the ward after a couple of hours in recovery.

Once on the ward, Alara's saturation levels were low sitting between 90 and 94. They eventually decided to give her some oxygen.
One tube and tape removed and now replaced with oxygen 😅 This won't be permanent, we just need to get it under control before we leave.

She's slowing starting her feeds through her new button and tolerating them well.

The paediatrician is happy with the wound site and we'll be seeing the surgeon today as well to ensure everything is going well from his side.

We'll be meeting with the stoma nurse today to get some education on how to take care of it and hopefully can go home today if all is well and we are comfortable.

09/12/2025

Alara loves keeping us on our toes.

At school yesterday, Alara had an episode which lead to an ambulance being called as per the school's protocol.

Alara threw up whilst having her feed which is not entirely abnormal, however it was what followed which lead to the ambulance being called. Alara was taking big, deep breaths but then holding her breath. When I got to school, she was definitely out of sorts.

This did not look like an epileptic episode as there was no visible seizures, however we're still unsure as to what caused it.

We spent a few hours in ED, obs were fine, RAT tests were negative and she was tolerating her feeds so we were all in agreeance and happy to go home and monitor.

This morning Alara is back to her normal self, surely conjuring up her next plan to get out of school 😉

Thank you to all the amazing staff at The Crescent School, Goulburn Base ED and the local paramedics, Laura and Danielle.

ED were absolutely run off there feet, we even had NUM, Ainslie as our nurse.

Southern NSW Local Health District

18/11/2025

This is the face of someone who finally gets to go home!

Cannula is out and we will continue antibiotics at home.
We'll spend the rest of the week resting at home just in case.

16/11/2025

After getting sent home from school on Tuesday with what we thought was gastro, we're now on day 4 in hospital with a severe UTI as well as Rhinovirus.

Alara isn't showing any typical symptoms of Rhinovirus which is unusual but showing all the signs of a severe UTI.
We can't seem to control her temperature, with it spiking again as soon as the panadol and nurofen wears off, however with the reduced feeds, she hasn't thrown up since Friday which is a plus.
We're back up to her full feeds today to see how she tolerates it.

IV antibiotics started on Friday but she doesn't seem to be showing any signs of improvement with her temperature.
Since Thursday, her tube has come out 3 times and she managed to tie her IV line in a knot overnight.

As always, the nurses and doctors at Goulburn Base have been fabulous and on top of everything.

Southern NSW Local Health District

17/10/2025

Loving the standing frame at school 🥰

06/10/2025

Alara's Army made it to Deni!

Jason Alborough

Address

Randwick, NSW
2031

Website

https://www.gofundme.com/f/alaras-batten-battle?lang=en_AU&fbclid=IwZXh0bgNhZW0CMTEAAR0R3RDZct48qsIXQ_tspCcB3TimQjGwKgZL

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