For parents Josh Docos and Nesa Morey, the journey to find answers for their five-year-old son, Armani, became a global search for a diagnosis that local clinicians had repeatedly attributed to his existing autism spectrum disorder. The Timaru family says that after Armani began suffering from debilitating, paralytic-like episodes and long periods of unconsciousness, their concerns were dismissed by medical staff as “autism overload.”
The situation reached a breaking point as the boy’s health declined. “He was dying in my hands, he was out. I was just praying and hoping it’s not game over,” Docos said. Despite multiple emergency visits, the family felt their observations of Armani’s physical decline were not being taken seriously. A referral to Starship Hospital in Auckland led to genetic testing sent to Finland, but those results returned negative for periodic paralysis, leaving the family without a clear path forward.
Seeking a second opinion, the family traveled to Istanbul, Turkey, where Morey grew up. Within days, doctors there provided a suspected diagnosis of Andersen-Tawil syndrome—a rare condition characterized by periodic muscle paralysis and heart rhythm abnormalities. The family now refers to Armani as a “zebra child,” a term used to describe those with rare, difficult-to-diagnose conditions.
Significance and Context
The case underscores the significant challenges families face when navigating the intersection of neurodiversity and rare medical conditions. For Docos and Morey, the primary struggle was ensuring that Armani’s physical symptoms were not “overshadowed by autism.” Their experience highlights the critical importance of parental advocacy in medical settings, particularly when symptoms deviate from a child’s established behavioral baseline.
Health New Zealand (Te Whatu Ora) maintains that the system provided appropriate access to expert care, noting that the Finnish genetic testing was specialized. Cecilia Smith Hamel, chief medical officer for South Canterbury, stated that the organization is reviewing the documentation provided by the Istanbul medical team and remains committed to the family’s ongoing care.
Looking Ahead
As the family prepares for the next phase of treatment, several developments are likely to follow. Armani has been accepted as a patient at The Royal Children’s Hospital in Melbourne, where he is expected to receive further care, including the implantation of a heart loop monitor to address the cardiac risks associated with his suspected condition.
Domestically, the case is slated for further review by clinical teams at Christchurch and Starship hospitals, which may incorporate the new findings from the Istanbul specialists. Should these medical reports be integrated into his local care plan, it could fundamentally change the approach to his treatment. The family, meanwhile, continues to raise funds through a Givealittle page and may seek access to the high-cost treatment pool to cover procedures not currently provided by the public health system in New Zealand.
