5 year old kiwi boy Armani', survives attack against odds, embarks to Turkey for life threatening rare genetic diagnosis.
Timaru, 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.
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'💜
Thank you for supporting Armani' 🙏
Thanks for being there for Armani' and supporting his journey 💛
Thank you for believing in Armani' 💛
Thank you Ryley ,Thank you for supporting Armani'. We are getting closer to answers 🙏🧬
Hi Erin, thank you for being a part of Armani' s journey 🙏 He s missing home and family ❤️
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