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Standing for Armani' : A Little Boy Fighting a Rare, Life Threatening Genetic Condition

  • Zebra Boy is counting days to USA ...

      19 October 2026
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    Heads up, Timaru—look who’s lighting up Evans Street! 🦓💜✨

    With the countdown to San Francisco officially on, our little Zebra Boy is shining brightly thanks to the incredible team at VAST Billboard!

    Most of Armani’s Türkiye medical costs have now been paid, and our focus has shifted to San Francisco for further specialist care, testing and the hope of accessing research and future treatment trials, as there is currently no cure for his rare conditions.

    Because the full cost of Armani’s continuing medical journey is still unknown, we have removed the fixed fundraising target. This allows us to keep raising whatever is possible toward his medical care, travel, accommodation and ongoing needs.

    Every donation, no matter the amount, will help carry Armani one step closer.

    A huge heartfelt thank you to VAST Billboard—and to every person continuing to donate, share and stand beside our family. We couldn’t make this journey without you. 💜🦓🇳🇿🇺🇸

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  • 🦓💜 Thank you, OJ in the Morning, for giving our little zebra a voice. 💜🦓

      28 September 2026
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    As parents, one of the hardest things is trying to speak for a child who cannot speak for himself. Armani is non-verbal, but his story deserves to be heard. ❤️

    A huge heartfelt thank you to OJ in the Morning for sitting down with Josh, listening to Armani’s journey and helping our community understand just how much this little boy has been through.

    With our journey to UCSF Benioff Children’s Hospital in California getting closer, every person who listens, shares Armani’s story or stands beside him helps carry his voice that little bit further. 🇳🇿✈️🇺🇸

    Thank you, OJ, for using your platform to help give Armani a voice when he cannot use his own. That means more to our family than you probably realise. 🥹💜

    🎥 WATCH ARMANI’S STORY HERE:

    https://youtu.be/3VPs1FB3XvY?si=uaNcLdoSdwKIe4Uc

    Please take a moment to watch and share. Help our little zebra’s story reach more hearts, more families and more people who believe every child deserves to be heard. 🦓💜

    Team Armani 🦓🌈💜

    Keep fighting, little zebra. 🦓

    #TeamArmani #ArmanisJourney #LittleZebra #RareDisease #RareDiseaseAwareness #PeriodicParalysis #AutismAwareness #Timaru #SouthCanterbury #OJInTheMorning

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  • 🦓💜 TEAM ARMANI UPDATE — SAN FRANCISCO IS GETTING CLOSER! 🇳🇿✈️🇺🇸

      19 September 2026

    Our little zebra’s journey continues! We leave NZ on 22 November for UCSF Benioff Children’s Hospital, where Armani will see Dr Alexander Fay on 25 November.

    Armani has an incredibly rare, complex presentation including Hypokalaemic Periodic Paralysis, Anderson–Tawil channelopathy phenotype/KCNJ12, Malignant Hyperthermia, Brugada syndrome, overlapping ion channelopathies, congenital coronary artery fistula and non-verbal autism. Our hope is for further investigation, research and treatment tailored to Armani. 🧬💜

    A huge thank you to House of Travel Timaru for covering Armani’s return flights, and to Heartland Chips Timaru, McCain Foods Timaru & Bunnings Timaru for believing in him. ❤️ Thank you also to Branded Kiwi for bringing his Zebra Boy van to life! 🦓🚐

    Armani’s story has touched people around the globe, and his journey will feature in That’s Life! magazine, Issue 44, on 2 November, written by Astha Gupta. 🌏

    Rare does not mean alone. The more we share, the more awareness we create — together we are stronger. 🦓💜

    Thank you to everyone supporting and believing in Armani. ❤️

    Same little boy. Bigger possibilities. 🌈

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  • Investigations are under way !

      8 August 2026
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    "We returned from Turkey with proof and spoke our truth. Pediatricians left Armani on his own to manage ultra-rare ion channelopathies—a decision that nearly cost him his life.

    Serious investigations are now underway across three major hospitals and with multiple doctors. We are fighting for answers, justice, and the specialized care Armani urgently needs.

    If you are able to support, donate, or share our story, every bit helps us keep fighting for Armani'. Thank you from the bottom of our hearts."💜🦓🌈

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  • 📢 IMPORTANT UPDATE: Armani’s Journey is Moving to San Francisco! ✈️🇺🇸

      29 July 2026

    We have some massive news to share regarding Armani’s medical path forward.

    Due to the extreme complexity and ultra-rare nature of his conditions, Armani requires a much higher, expert level of care. Because of this, the Royal Children's Hospital in Australia is no longer in the picture. Instead, we are heading straight to the world-renowned UCSF Benioff Children's Hospital in California!

    Armani will undergo critical treatment trials and consult directly with the world’s top specialists for his complex conditions:

    🔹 Hypokalemic Periodic Paralysis

    🔹 Malignant Hyperthermia

    🔹 Brugada Syndrome

    🔹 Andersen-Tawil Channelopathy Phenotype - Kcnj12

    He will be under the direct care of Prof. Dr Alexander Fay (a leading pediatric neuromuscular specialist) and meet with Prof. Dr Louis Ptáček (the pioneer scientist who discovered the genetic mutations for periodic paralyses). Due to his unique clinical presentation, Armani is a research candidate, which makes this journey even more vital for his future and for medical science.

    Getting a non-verbal, autistic child from New Zealand to the USA for specialized inpatient monitoring, trials, and medical travel requires immense resources. This breakthrough gives Armani his best possible fighting chance, but we need our community now more than ever to help us fund this critical trip.

    Thank you for standing with our brave boy!

    🦓🌈💟

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  • " Our Zebra Boy " is Going Global : A Race Against Time 🦓🧬💜

      2 July 2026
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    Dear beautiful supporters,

    Fighting an ultra rare genetic condition is an uphill battle, but the roadblocks at home have became heartbreaking.

    Paediatricians keep making referrals , but district after district keeps rejects them. Wee are left on our own and being told that Armani' s case is" too hard to deal with😞". As parents, being turned away while fighting to keep our special needs, non verbal son alive is devastating.

    Because Armani' urgently needs an implantable loop monitor for dangerous arhtymias and Nz options have failed us, we are racing against time to take him overseas for curicial treatment trials.

    A Wave of Hope

    There's no cure yet but global scientists are working tirelessly.Armani has a unique "phenotype" and has been accepted to be seen by a world-pioneer neuroscientist! This opportunity holds a life changing potential to give him a better quality of life.

    Headlines & Community of Love

    Armani' s strength is making waves! He recently made "RNZ,1News,Nz Today, and many newspaper headlines as " Zebra Boy" reaching a global Closer to home , a massive thank you to Branded Kiwi - Washdyke for gifting a magnificent custom wrap for Armani's van! Reminding us we aren't alone.

    How You Can Help

    The system here may given up, but we never will . Getting Armani' to these world- leading experts overseas is his best shot,but we need your help to get him there. Every donation and share counts. Thank you for fighting for our little boy.

    With love , Armani's family ❤️

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  • 🦓🦄WE ARE FINALLY HOME -- BUT ARMANI' S JOURNEY IS FAR FROM OVER 🦓🦄

      30 May 2026
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    After months of searching across the world for answers, we are finally home in New Zealand and reunited as a family.

    The journey from Türkiye was incredibly hard on Armani'. Despite the long-haul flight and ongoing health challenges, he showed incredible strength.

    After extensive overseas assessments, Armani' has been clinically diagnosed with Anderson-Tawil Phenotype Channelopathy, alongside Hypokalemic Periodic Paralysis and Malignant Hyperthermia Susceptibility.

    His condition involves overlapping potassium, sodium and calcium ion channelopathies, making his case exceptionally rare. Armani' is now a genetic research candidate, with his raw genetic data currently being analysed by RTSGD and Dr Ali Torabi's research team.

    His case is being reviewed by specialists in New Zealand, Australia, Türkiye, the USA, Switzerland and Amsterdam.

    Before leaving Istanbul, Prof. Dr. Alpay Çeliker referred Armani' to the Royal Children's Hospital Melbourne, and we are now waiting to hear the next steps.

    Armani' remains in urgent need of a loop monitor and lifelong specialist care.

    As parents, it is heartbreaking knowing our little boy faces so many challenges, but for the first time we also have answers and hope.

    Thank you to everyone who donated, shared our story, and supported our family. Because of you, we were able to travel across the world in search of answers.

    Today we are home. We have answers. We have hope. And we have our brave little boy. ❤️🦓💜

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  • RARE DISEASE MISSED IN NZ, IDENTIFIED IN TURKIYE

      6 April 2026

    💔 We didn't want to post this yet ...but we can't wait any longer.

    Back in NZ ,we were told to stop testing.We were told Armani' already had" enough investigation ".

    But we knew something wasn't right . Since coming to Turkiye everything changed .

    Armani' has now being diagnosed with Hypokalemic Periodic Paralysis (HYPOPP)

    - A rare land potentially life-threatening condition.Even more concerning, doctors have now identified dangerious heart rhythm abnormalities.

    He now requires surgically imolanted cardiac event monitor,a small device placed under the skin to continuously monitor his heart and life-threatening events.

    💔This could have been taken seriously earlier.

    We are now working with international genetic specialists , and Armani' s case is considered a -ultra-rare( 🦓 -zebra) , with whole genome sequencing results expected soon.

    Right now we are self- funding everything, specialist care, testing, and ongoing treatment in Turkiye .

    We truly cannot do this alone anymore.

    If you can help in anyway - donate, share,or even just comment- it means everything to us.

    Thank you for standing with Armani'.

    Love from Mum&Dad, Aurora and Arcadia'💜

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  • A Big step forward for Armani'

      1 March 2026
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    We have an important update on Armani' s journey. After seeing endocrinology, nephrology, cardiology and genetics specialists in Istanbul at Acibadem International Hospital Altunizade, Armani' has now been clinically diagnosed with Hypokalemic Periodic Paralysis Type 1.

    Armani' s only 5, non -verbal, autistic and doctors believe he is the first child recognized with this condition in Turkiye and now in New Zealand , and one of the Young patients in the world .Next week we will meet again with the medical team regarding a clinical diagnosis of Anderson Tawil Syndrome Type 2 ( Long QT) based on his triad clinical features.

    Despite everything he faces , Armani' continues to smile and show incredible strength every day.

    Thank you to everyone who has supported, shared and prayed for Armani'. Your kindness is helping our little brave warrior continue this journey ❤️

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  • Almost in Istanbul 🇹🇷

      19 February 2026
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    We are now in final stretch and almost in Istanbul . Leaving NZ and our family behind was very emotional, but Armani' has been an absolute superstar through the long flights and travel . We are feeling hopeful, grateful and overwhelmed by all your love and support.

    Thank you for being part of his journey with us 💛

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  • Suitcases Are Ready, Hearts Full --- 3 Days Until Armani's Life- Changing Trip "

      15 February 2026
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    Our hearts are so full 💛 Armani's story is now in the newspaper and online and the support has been incredible.

    We have just 3 days to travel ✈️🇳🇿🇹🇷

    Thank you for every donation, share, kind message and prayer 🙏 You are all part of Armani's big journey and we are so grateful.

    Please keep sharing his link --- every bit helps us get closer to the answers and care he needs.✨

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  • Armani' journey is approaching 💛

      4 February 2026
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    From the bottom of our hearts , thank you to everyone who has donated, shared his link, held him in your thoughts and who are getting behind Armani' through his journey.We are in final preparations before heading to Turkey , Acibadem International Hospital on the 18th of February.

    Thank you Josh & Nesa

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