Sarahstrozkiy

Sarahstrozkiy Rare batten disease mum to Sonny 🌙🧡
Family, style & honest living
Stylist & app founder · Brisbane

15/06/2026

I hate this so much. I’m trying so hard to be okay. What would you do? I feel like I’m failing. I’m trying to be strong for him. I’m living in the present but always fearing the future. Holding onto hope for a cure one day. Maybe. Then I have to live with this feeling while moving with life. Work. Chores. Maintaining friendships. Family connections. It’s all so much sometimes. And I fight it all the time. I just wonder what other mums would do if they were in my position? 💔🧡🌙

14/06/2026

When Sonny was diagnosed with Batten disease, I realised there is no such thing as waiting for the “right time” anymore.

So lately we’ve been saying yes to more family projects, more messy afternoons, more creativity and more memories.

Art won’t fix my grief. But it gives me somewhere to put it. 🧡🌙

11/06/2026

A few things I learnt today… 😂

1. Texture art is WAY harder than it looks, but we’re making it our new family hobby and honestly it’s been so wholesome and healing. 🩷

2. Kmart has changed the layout… thoughts? 👀

3. I’m really loving these quick little family vlogs. They feel easy, real and we’re having fun wherever we can.

4. I need to shop on my own next time. 😂

Life looks different these days, but we’re finding joy in the little moments. ✨

10/06/2026

Hope this makes you laugh just as much as it did for me 🤣🤣🤣🤣 Tagging because… maybe you need to hire my husband for your next bag advertisement hahahahaha

10/06/2026

To be honest, when Sonny was diagnosed with Batten disease, everything stopped.

Styling.
Content.
Business ideas.
Future plans.

I had been working on Build My Fit and had so many ideas I wanted to bring to life, but suddenly my focus became hospital appointments, treatment plans and learning how to navigate a completely different life.

The last couple of months have been about slowing down, grieving, adjusting and finding our new normal as a family.

But creating has always been something that brings me joy.🌙

So in between everything, I’ve slowly been working on a new feature for Build My Fit that I’m really excited about.

📅 You can now save your favourite outfits and plan them directly into your own outfit calendar.

The whole goal is to make getting dressed feel easier.

Got coffee with a friend, work, school pick-up or a special event?
Add it to your calendar and plan ahead.

So fun and Simple. 🩷

I know life feels busy for so many women right now and if I can help make one small part of your day easier then that makes me really happy.

Thank you for supporting me, my family and this little app I’ve been building. It means more than you’ll ever know.

If you’re curious and want to see how it works, comment BMF and I’ll send you the link 🌙🧡

🧡 Wow. Just wow.Today, hundreds of beautiful souls from all around Australia wore orange, shared photos, decorated their...
09/06/2026

🧡 Wow. Just wow.

Today, hundreds of beautiful souls from all around Australia wore orange, shared photos, decorated their homes, dressed their families, talked about Batten disease with friends and family and helped shine a light on a disease most people have never even heard of.

To some people, it’s just a colour.

But to us, it’s so much more.

Every photo, every message, every orange outfit was a reminder that we aren’t walking this journey alone. During one of the hardest seasons of our lives, you’ve wrapped our family in so much love, kindness and support. 🧡🌙

As parents navigating our beautiful little boy Sonny’s diagnosis, there are days that feel incredibly heavy. But today was one of those days where community showed us just how powerful it can be.

Thank you for caring. Thank you for asking questions. Thank you for helping spread awareness. Thank you for loving our boy.

We truly believe in the power of community, hope and kindness. And no matter what this journey brings, we will continue showing up with love, light and gratitude for every single person who has chosen to walk alongside us.

Our hearts are so full. 🧡

Love,
Sarah, Jason & Sonny

P.S. If you’d like to learn more about Batten disease, follow and support for updates, education, research and resources for families affected by this devastating disease. Every conversation and every share helps create more awareness.

08/06/2026

Trying to find an orange shirt for hubby 🫠🧡

1. Orange is surprisingly hard to find.
2. For a man whose wardrobe is 97% black, white, navy and grey, this was a huge moment.
3. Apparently my stylist opinion wasn’t required 😂
4. I bought both Best & Less tees. 😉
5. The downside… I may now be forced to wear Tigers all day tomorrow

08/06/2026

🧡 Thank you sooo much to everyone who has been sending me photos of your orange outfits and orange finds!

June 9th is International Batten Disease Awareness Day and orange actually holds such a special place in our hearts. It’s Sonny’s favourite colour. 🧡

For our family and for so many other families affected by Batten disease, orange represents awareness, hope, and the children we are fighting so hard for every single day.

If you’d like to be part of it, feel free to send me a photo of yourself wearing orange or anything orange you spot. I’d love to share them on the day and show just how incredible this community truly is.

Thank you for helping us spread awareness and shine a light on this devastating disease. 🧡

https://www.instagram.com/reel/DZQ3uRcFALF/?igsh=OG1pbWZtenB1aW10🧡🌙 Thank you, Kate, for giving us the opportunity to sh...
07/06/2026

https://www.instagram.com/reel/DZQ3uRcFALF/?igsh=OG1pbWZtenB1aW10

🧡🌙 Thank you, Kate, for giving us the opportunity to share Sonny’s story and help bring awareness to Batten Disease. Our little boy is pure sunshine. He wakes up smiling, finds joy in the smallest things, and lights up every room he walks into. While the world sees his beautiful smile, behind it we carry a quiet grief for the future we thought he would have. We hold so much love, so much hope, and so much heartbreak all at once. If sharing his story helps even one family, raises awareness, or brings us closer to better treatments, then it is worth it. 💛✨

04/06/2026

I have a little community challenge for us. 🥹🙏

As many of you know, Sonny was recently diagnosed with CLN2 Batten disease. One of his absolute favourite colours in the world is orange. He lights up every time he sees it and it has become such a special colour for our family. 🧡

With International Batten Disease Awareness Day coming up on June 9th, I’d love for us to wear orange together in honour of Sonny and every child fighting Batten disease.

🧡 Feel free to DM me a selfie of you wearing orange! I’d love to collect photos from our community to share on the day.

🧡 Wear orange on 9th June for International Batten Disease Awareness Day if you can or add a ribbon somewhere.

🧡 By sending a photo, you’re giving me permission to share it on my socials as part of a community collage to help raise awareness for Batten disease and show the power of this beautiful community. 🙏👯‍♀️🧡

You don’t need to buy anything new. A scarf, earrings, a striped tee, a dress, a bag… anything orange counts.

Let’s fill our feeds with orange, start conversations, raise awareness and show families like ours that they are not alone.

Thank you for always showing up for us. It means more than you’ll ever know 🧡🌙

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