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I got to play a gig for the first time in YEARS 😭🙏 I have basically stopped playing music because my hearing loss has become so significant. I’m saving for hearing aids which I hope will help, but ultimately I’m so grateful that I’ve been able to “pivot” in my content creation journey. Thank you all for being here! Thank you to the @xlhaustralia for bringing us out of retirement 🤣 but more importantly for the amazing advocacy for us XLHers! #XLH

🎶✨ Incredible talent, heartfelt gratitude ✨🎶

A huge thank you to the amazing Nat, Sofi & Karena — the talented trio behind “Bone Pain” — for your incredible performance at the XLHA 2026 Patient Education Weekend.

Your music, energy and passion brought something truly special to our weekend and created moments of connection, joy and reflection for our XLH community. 💜

We are incredibly thankful for your generosity in sharing your talent with us and helping make the weekend so memorable.

Thank you for being part of our XLHA family and for reminding us all of the power of music, community and lived experience. 🎤🎸💜

#XLH #XLHAustralia #BonePain #PatientCommunity #Gratitude BeyondTheChart

$Oh we doing 2016 throwbacks? 😂Believe it or not I was already longggg into the content creation space back then. 2016 l only had about 20,000 YouTube subs but that felt like a lot. I was teaching at a Primary School in South Auckland & making guitar tutorial content in the evenings with my lil brother @amutaranna with the dream of doing content creation full time. 10 years later & we still not quite there (kids are expensive). I couldn’t cook anything back then so the idea of cooking content would’ve been a ludicrous suggestion in 2016. My hair was blacker, my back was straighter, less fractures, no kids but the same wife. 10 years on & life looks SO different. I couldn’t do classroom teaching these days, nor guitar content due to the physical limitations from XLH (rare disease) but I am sooo grateful that I am still able to walk, provide for my family through content creation & being a dad and husband is just the coolest job in the world. The sick leave & pay situation is pretty rough though not gonna lie & you have to provide the other staff members with meals every single day & night but “my life is gewdddd, real gewd” - Nacho Libre voice. #TYJ #2016 Also how amazing are @iriaumatangi @drum.ability & @westkarena in slide 1?! 🙌🔥$

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