Hi guys, I'm Minie, #Italian special needs mum from #Sydney! 🇮🇹🇦🇺Welcome to our channel, where I share our daughter’s journey with #Kabukisyndrome.
In this podcast episode, I interview Simone, a mum and entrepreneur who shares her son's journey with Congenital Nephrotic Syndrome of the Finnish type.
The interview touches the complexities of kidney transplants on babies, the relationship between siblings, the creation of an agency aimed at raising awareness on disabilities and more.
Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know in the comments! 👇

You can find Simone here:
➡️ https://www.disinfluencer.co
➡️ https://www.instagram.com/disinfluencer.co/?hl=en

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

Hi guys, I'm Minie, #Italian special needs mum from #Sydney! 🇮🇹🇦🇺Welcome to our channel, where I share our daughter’s journey with #Kabukisyndrome.
In this podcast episode I interview Sharon, my first guest who will speak about the challenges of having a genetic chronic condition herself, while also advocating for her daughter (and son).
In this interview she touches the very important topic of medical gaslight and how hard it was for her to get a proper diagnosis, despite being dismissed many times by medical professionals who didn't recognise her condition.
Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know in the comments! 👇

You can find Sharon and her organisation here:
Website ➡️   https://anzfaid.org
Facebook ➡️ https://www.facebook.com/share/1CNWAmFxSF/?mibextid=wwXIfr
Instagram ➡️ https://www.instagram.com/autoinflammatory_aus_nz?igsh=MW9xdjEzbDZhYTVicA==

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

In this podcast episode I interview Mari, an amazing mum - and Zumba instructor - who shares on socials Kai's (her son) journey with Hirschsprung Disease and ASD (autism).
The interview spans from the complexities of a bowel disease like Hirschsprung, to an episode of discrimination from a day care centre, the challenges that couples face when their child has very complex needs, and more.

Mari explains everything with such grace, patience and determination, but also lots of emotions while talking about Kai's incredible resilience.

Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know!

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

“You should take care of yourself!”  

“Go get a massage!”  

“Don’t forget to rest!”

 Have you ever heard these well-meaning but *completely useless* pieces of advice? I did—over and over again—when I was a new mum, deep in the trenches of sleepless nights, hospital visits, and feeding pumps. And let me tell you: they didn’t help. At all.

Hi, I’m Minie, a special needs mum based in Sydney, and today’s video is part rant, part love letter, part public service announcement. For Mother’s Day, I’m giving a voice to the real struggles behind the glossy idea of “self-care” for mums like me. Especially those living in survival mode. 

In this brutally honest and slightly funny episode, I’m breaking down:

💚 Why “take care of yourself” often feels like a slap in the face  

💚 The stark difference between life on plane A vs plane B  

💚 What survival actually looks like for a medical mum  

💚 The *real* basics mums should focus on (poop, eat, drink)  

💚 Practical tips on how to support the mums in your life *without* sounding dismissive

This Mother’s Day, let’s stop giving advice—and start offering real help.

🎥 Also available as a video: https://youtu.be/lSxHgxCvOAs

📲 Follow for more stories of love, strength, and Kabuki Syndrome: @MyKabukiGirl  

#HappyMothersDay #MyKabukiGirl #SpecialNeedsParenting

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

I was invited to speak on the theme "expansion" at the event @Storiesthatstir, on the 24th February 2025. I know the lovely organiser, Monica, and I was honoured when she invited me to talk about our story.

This is the story of how becoming a special needs parent didn’t just expand our world—it catapulted us into a multiverse. One filled with fear, medical trauma, endless questions... but above all, with love.

I share our journey through rare disease diagnosis, NICU stays, open-heart surgery, and the terrifying uncertainties that come with Kabuki Syndrome. But I also share what gives me strength: a superhero metaphor that unexpectedly became my lifeline.

💚 If this story resonates, please share this podcast. You never know who might need to hear it today.

—
📌 Follow our journey on socials: @mykabukigirl
🎥 Watch the video version on YouTube: https://youtu.be/xtA1BfNg9Cs or

Read the blog post: https://www.mykabukigirl.com/post/the-lantern-against-all-fears 

#MyKabukiGirl #SpecialNeedsMama #SpecialNeedsParenting #KabukiSyndromeAwareness #GreenLantern #RareButReal #DisabilityParenting #MedicalMum #HeartWarriorMama #LoveIsMySuperpower #RealParentingMoments #RareDiseaseAwareness #storiesthatstir

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

What happens when one date—April 25th—means two completely different things depending on where you live?

In this reflective episode, I read a blog entry I wrote about Anzac Day and Liberation Day, and what they mean to me as an Italian-Australian mum raising a child with special needs. Whether it’s silence or celebration, loss or liberation, this day reminds us of the importance of memory, peace, and teaching our children the deeper values behind historical facts.

I hope this reflection brings something meaningful to your day.

💚 Read the blog on https://www.mykabukigirl.com/post/25-april-for-us
🎧 Follow the podcast for more stories, reflections, and interviews in the special needs world.

#HowWeSpecialNeeds #KabukiSyndrome #AnzacDay #LiberationDay #SpecialNeedsParenting #LestWeForget #PeaceMatters #ItalianAustralian #ParentingReflections #DisabilityAwareness #MyKabukiGirl #SpecialNeedsPodcast #FestaDellaLiberazione

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

🎙️ Life with a SWASH Brace: What Parents Should Know

When my daughter was prescribed a SWASH brace, I didn’t expect to cry—but I did. In this episode, I’m sharing our honest experience with this hip-stabilizing orthosis: the emotions, the pros and cons, and how we’re learning to cope day by day.

You’ll hear:
💚 What the SWASH brace is and why it's used
💚 My unfiltered reaction as a special needs mum
💚 The practical side—how we put it on, adapt it, and prevent wear and tear
💚 Emotional & mindset strategies to stay grounded
💚 A free downloadable tool I created to help you track your child’s brace usage, side effects, and improvements

🎁 Grab the spreadsheet here: https://www.mykabukigirl.com/hip-brace-tracker

This is not medical advice—just a mum sharing her journey through Kabuki Syndrome and everything that comes with it. If your child is starting with a brace or you’re just feeling overwhelmed by one more thing, I see you. I’m with you. And I hope this episode brings you some clarity and comfort.

💌 Let’s connect on Instagram: @MyKabukiGirl
📺 You can also watch the full video on YouTube: https://www.youtube.com/watch?v=1EobfkRxaH4

Or you can read it on my blog 👉 https://www.mykabukigirl.com/post/life-with-a-swash-brace-what-parents-should-know

#SWASHbrace #SpecialNeedsParenting #KabukiSyndrome #Orthotics #ParentingAChildWithDisabilities #HowWeSpecialNeeds

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

In this podcast episode I interview La Toya, a sweet and strong mum who shares on socials Luna's (her daughter) journey with Kleefstra Syndrome.
La Toya shares Luna's and her family's roller coaster with such honesty and courage, it's truly inspiring to hear her story!
Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know!

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

It's story time!
In this episode I will share with you the story behind the lovely butterflies that for two years have populated our kitchen and dining room, and why it's so hard to say goodbye.
What should I do now? Should I put them back? Should I put something else instead? Let me know in the comments!

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️

This is my first interview and it couldn't have been with a better guest: Ana Romanow. She's a super mum and super woman who's sharing her son's journey with Menkes Disease.

Although Philip is not here with us anymore, his light and meaningful life keep inspiring all of us! I am so grateful that Ana allowed us to know even just a fragment of her intense experience with motherhood and Menkes.

Are you a special needs parent? Are you interested in being interviewed on How We...Special Needs? Let me know in the comments!

You can find Ana here: https://www.instagram.com/anamariaromanow/

👉 Next Episode Teaser: Special Needs Family Vlog: How we spent the Holidays

Send me a feedback!

Support the show

Did you like this episode? Let me know! 💕
Don’t forget to subscribe for more stories of love, strength, and Kabuki Syndrome.

Follow me on TikTok, Instagram and YouTube @MyKabukiGirl and share your thoughts!

Check the website www.mykabukigirl.com for merchandise and so much more!👀

Stay safe, ciao! ☺️