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

  • " 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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