5 year old kiwi boy Armani', survives attack against odds, embarks to Turkey for life threatening rare genetic diagnosis.
Canterbury
Help Support Armani’s Medical Care
Armani is a 5-year-old, non-verbal autistic child with multiple rare and life-threatening medical underlying conditions.
Armani was repeatedly taken to hospital and discharged from Emergency Departments multiple times without a unifying proper diagnosis.His symptoms were attributed primarily to autism and a case of diagnosis overshadowing. His condition deteriorated rapidly and significantly.
We immediately decided to get him to Starship where it took 10 doctors and 2 weeks, to finally figure out that he was suffering a Secondary Hypokalemic Periodic Paralysis attack.
This is a super rare genetic disorder causing episodic paralysis, critically low potassium levels, and dangerous cardiac complications. He has severe bradycardia, reported long QT during attack and a congenital coronary artery fistula, placing him at ongoing risk of serious cardiac arrest events.
Armani can't communicate with words explain pain or early warning symptoms and requires close medical monitoring from his parents for triggers for hypo pp every day.
Armani’s medical care involves specialist cardiologist, neurologist,genetics, metabolic management, frequent investigations, ongoing monitoring, and travel for specialist care.We are embarking to Acibadem Hospital in Turkey for a diagnosis,treatment and emergency plan.
Give a little page has been created to help cover medical-related expenses and ensure Armani can access appropriate specialist care.
Thank you for your support ❤️
Your donations will help cover :
Advanced genetic and medical testing.
Specialist consultation and therapy.
Hospital stay in Istanbul (3-4) months.
Travel and flights for family support.
Daily care, housing and transport cost for his siblings in NZ.
🦓🦄WE ARE FINALLY HOME -- BUT ARMANI' S JOURNEY IS FAR FROM OVER 🦓🦄 30 May 2026
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. ❤️🦓💜
Thank you for standing for Armani'' to support his journey ❤️🙏 Your support means a lot to us .
Thank you , appreciate your kind words❤️ Thank you for believing in Armani' 💛
Thank you Lisa for supporting Armani' 🙏
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