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. ❤️🦓💜
