RNZ<\/a><\/p>\nTimaru couple Josh Docos and Nesa Morey say their five year old son Armani started suffering from paralytic fits last year and would sleep up to 16 hours.<\/p>\n
It gave them a scare and they made multiple visits to their local hospital’s emergency department when Armani passed out.<\/p>\n
“He was dying in my hands, he was out. I was just praying and hoping it’s not game over,” Docos said.<\/p>\n
“He was very sluggish, he wasn’t himself. Usually he’s running around, he’s bouncing off the walls, he’s very active. We noticed that just the way he was was upside down.”<\/p>\n
Armani had already been diagnosed with non-verbal autism.<\/p>\n
But Docos said his son’s lack of alertness and tendency to pass out was unusual \u2013 and doctors at Timaru and Christchurch put it down to autism overload.<\/p>\n
‘It just doesn’t make sense’<\/p>\n
“It wasn’t good because he was just getting worse and worse … we knew he wasn’t a hundred, we were trying to tell them he wasn’t even at 30 or 40% but they’d look him up and down and go ‘he’s alright he’s just a bit stressed out it’s just autism overload’,” he said.<\/p>\n
“I was like what? That just doesn’t make sense.”<\/p>\n
Docos said they then took their son to Starship Hospital in Auckland, where genetic tests were sent overseas but came back negative for a suspected disorder that causes periodic paralysis.<\/p>\n
Feeling like they had exhausted their options in New Zealand, they contacted a hospital in Istanbul known for its genetics expertise.<\/p>\n
Nesa Morey grew up there and said within days of arriving in May they had a suspected diagnosis \u2013 for Andersen-Tawil syndrome, which causes periodic muscle paralysis and heart rhythm abnormalities.<\/p>\n
‘Armani is now a zebra child’<\/p>\n
She said that came with relief and wants other parents to know to trust their instincts.<\/p>\n
“Go with your gut feeling, you raised your child you know their routines and if something’s not adding up.”<\/p>\n
She has recently returned from Turkiye where Aramani was treated as a unique, so-called zebra case by doctors.<\/p>\n
“Zebra means invisible rare disease it’s hard to find, hard to figure out and Armani is now a zebra child.”<\/p>\n
Armani is under clinical review by genetic specialists overseas and Morey said he had been accepted as a patient to The Royal Children’s Hospital in Melbourne.<\/p>\n
Now at home, she said they were closely monitoring their son as she prepared to take him to Australia for treatment \u2013 including to have a heart loop monitor implanted.<\/p>\n
“Armani can have a better quality of life, he won’t be invisible anymore and he can get the treatment he needs to be able to live his life.”<\/p>\n
Health NZ: Case to be referred to clinical teams<\/p>\n
Health NZ’s chief medical officer for South Canterbury, Cecilia Smith Hamel, said it was confident that New Zealand’s health system had provided appropriate access to expert clinicians for Armani’s care.<\/p>\n
“Armani has had specialised genetic testing, not available in New Zealand, sent to a laboratory in Finland, which was negative for periodic paralysis conditions,” she said.<\/p>\n
“We have reviewed the paperwork from the Turkish medical team that has so far been made available.”<\/p>\n
Smith Hamel said it would continue to see and care for him and the family and his case would be referred to clinical teams at Christchurch and Starship hospitals.<\/p>\n
“This will include reviewing all new information from the Istanbul medical team, which will be taken into account for his care.”<\/p>\n
She said that would likely also include further review by the genetics service, as was offered in December 2025.<\/p>\n
Docos said they now had a comprehensive medical genetics status letter for their son from a doctor in Turkiye who specialised in genetics and was a member of an internationally recognised body in that field.<\/p>\n
“At least now it’s not overshadowed by autism … they have to work in tandem with that now and that’s all we wanted,” he said.<\/p>\n
“We wanted them to be able to listen to the other side of what we were trying to say … that there’s other things actually medically wrong with our son and now we’ve actually got the evidence and proof for that.”<\/p>\n
A positive outlook<\/p>\n
Morey said specialist doctors in Istanbul told them with treatment, her son may be even be able to talk.<\/p>\n
“[They told me] he can talk when his diaphragm is functioning properly and he can breathe in and out and his muscles will be working well with the medication, then you will have a slightly different child,” she said.<\/p>\n
“He should be able to enjoy his life more than what he is now.”<\/p>\n
She said they were raising money for Armani’s ongoing treatment through a Givealittle page<\/a> and also hoped to apply for funding through the high cost treatment pool, which is available for patients requiring procedures that are not otherwise funded or provided by the public health system in New Zealand.<\/p>\n","protected":false},"excerpt":{"rendered":"A family says they were forced into a world-wide search for a medical diagnosis for their young son…\n","protected":false},"author":2,"featured_media":460316,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[158,42,134,43,40,38,41,39],"class_list":["post-460315","post","type-post","status-publish","format-standard","has-post-thumbnail","category-headlines","tag-christchurch-canterbury","tag-headlines","tag-health","tag-news","tag-top-news","tag-top-stories","tag-topnews","tag-topstories"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/460315","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=460315"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/460315\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/460316"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=460315"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=460315"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=460315"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}