Written by Otis – with a little help from his mum Katya! (NSW, November 2025)

My name is Otis (or Otie, as my friends and family like to call me!) I’m one and a half years old and I have TSC (Tuberous Sclerosis Complex).

You might remember me from when my Mum, Dad and I did some fundraising for TSC Awareness Day or maybe you saw me on Channel 7 News when I got to explore the brand-new Sydney Children’s Hospital before it opened! How cool was that?! 🤓

It’s been a big few years for me and my family – full of adventures, hospital stays, courage, and cuddles. Mum and Dad say we’ve learned a lot about gratitude, strength, and finding joy in the tiniest things  – like  blowing bubbles or giggling at ducks. 🐥

Sometimes it’s hard to know when you’re ready to share your story, but my Mum, Dad and I have been feeling a bit braver lately, so here’s a little peek into our world.

When I’d been in Mum’s belly for 39 weeks, the doctors found some tiny tumours on my heart. That’s when we learned about TSC. When I was born, I went straight to the NICU, where doctors found more tumours on my brain and it was eventually confirmed I have the TSC2 gene. It was all very scary for Mum and Dad, but they say that’s also when they met some of the most amazing, kind people ever – like my TSC nurse Elle Farley, my neurologist Dr Denise Chan, and the rest of the team at Sydney Children’s Hospital.

They’ve helped me and my family every step of the way – from joining the TSC-STEPS clinical trial, to trying to control my seizures, monitoring my other organs, supporting me through countless hospital stays, and figuring out my feeding tube (I call it my noodle 🍝😄).

The pesky little tumours in my brain are still causing seizures every day (they’re so sneaky and mean!) and slowing my development a bit, which can be tough for my Mum, Dad and me. My medicine has been a bit silly and not helping as much as we hoped, so my clever doctors have put me on a special ketogenic diet that seems to be making my brain a little happier – and I’ve been learning some cool new tricks! Now I can crawl, stand and climb, and I love playing with all my toys!

Even though life with TSC can be tricky, I’m still the happiest little boy and I’m doing okay. We just don’t know what “okay” looks like in the future, and that’s okay too. 💛 I love the beach, the swings, bike rides, and lots (and lots!) of cuddles.

Mum found out that she also has TSC; hers just looks a little different as it’s mosaic. It’s been a big thing for her to process, but now we know we share something extra special. We’re both superheroes with matching genes! 🦸‍♀️🦸‍♂️ A wise doctor told us that we are all made up of so many beautiful genes and that TSC2 is just one of them, so we can’t let that define us. ❤️

Every week in Australia another baby like me is born with TSC. There’s no cure yet, but there’s so much hope. Everyone, including all those clever doctors, nurses, and researchers are working so hard – and every bit of love, awareness, and support helps kids like me. 💛

Through everything, my Mum, Dad and I have learned that normal can change and happiness can look a little different, but kindness and community make all the difference. That’s what keeps us smiling, even on the hard days.😌