26/02/2026
💜💚💙💛🩷 Update 🩷💛💙💚💜
We haven’t shared a general update in a while, so here’s a little catch-up.
2026 has already been full throttle and we haven’t even started therapy yet. Since Christmas, we’ve squeezed in three camping trips, with another one already booked for Easter.
Camping with Alara isn’t simple. Justin has had to MacGyver her bunk to make it safe, and lifting her up the stairs and into bed is getting harder by the trip.
The hardest part though is watching all the kids run off to play while she can’t join in.
Truthfully, it’s harder for us than it is for her. She doesn’t have the awareness that her abilities have changed. She’s just happy watching the world go by and soaking it all in. And the kids around her are are incredible. They always stop to say hello, chat to her even though she can’t chat back, and her big sister proudly takes her for walks in her chair like it’s the most natural thing in the world 💕
A couple of weeks ago we finally received our new equipment after almost a year of waiting. Some of it we trialled back in 2024… so yes, over a year 😪
We now have:
• A new shower commode… which doesn’t fit in our shower 🤦🏻♀️ We suspect we’ve been given a newer model than the one we trialled, so now begins the bathroom puzzle.
• A beautiful purple Rifton Activity Chair, which she desperately needed after outgrowing the one generously gifted to us.
• A bright pink recliner on wheels that honestly looks comfier than our own couch.
• Our hoist has finally arrived, so we’re no longer paying ridiculous rental fees.
• And her new bed. We pushed hard for something that looks like a normal little girl’s bed. I refused to have my six year old sleeping in something that felt like a hospital ward.
We are finally getting somewhere with NDIS. We now have a specialised planner dedicated to Alara’s case. Which means ANYTHING we need, we go to her and only her. No more submitting reports to the NDIA and waiting months for a call back. Our planner gets it done within days.
These planners are very limited and it was HARD to get one. I'm unsure what diagnosis you have to have to be able to access this amazing service, but with us, we needed to have Childhood Dementia evidence, and very specific evidence at that.
We met our new physio on Monday and she was amazing!
Thank you to everyone who sent recommendations. Unfortunately, due to Alara’s complexities, we weren’t able to find someone local who could take her on. But we’ve found another absolute unicorn in Bowral who has worked with children with Batten Disease before… which is incredibly rare.
We are now on the hunt for a physio who can hydro with Alara locally.
As you may have seen last night, Alara is now on 12 hour continuous feeds.
We were having a lot of trouble with Alara vomiting up her feeds, as well as a constant daily cough.
Drastically slowing her feeds down has helped immensely. It took a bit to get used to but we're now in more of a routine.
Alara will start her 12 hour feed at 6am then will have another 40 minute feed at about 7.30.
This year, our plan is to get Alara out as much as possible. Alara has declined drastically over the last 12 months so making memories while she can still enjoy them is our goal.
On that note, if anyone knows of any activities that you think Alara would love, please let me know.
It can be anywhere in Australia 🇦🇺
I would absolutely LOVE to get the girls to Disneyland, and I might enjoy that slightly too 🙈 but we all know how costly that trip would cost, so our own backyard will suffice for now.
Tomorrow is Rare Disease Day. If you know of any businesses that have the capability to "light up" their business, please tag them!
Rare Disease Day
