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

  • 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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