{"id":109826,"date":"2025-10-08T22:54:13","date_gmt":"2025-10-08T22:54:13","guid":{"rendered":"https:\/\/www.europesays.com\/ie\/109826\/"},"modified":"2025-10-08T22:54:13","modified_gmt":"2025-10-08T22:54:13","slug":"family-fights-to-keep-baby-with-rare-genetic-disorder-alive-2","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/ie\/109826\/","title":{"rendered":"Family fights to keep baby with rare genetic disorder alive"},"content":{"rendered":"

Pohamara, 37, told the Herald \u201cthe slightest infection could be fatal\u201d.<\/p>\n

\" Katana Morunga was diagnosed with the genetic disorder just months into her young life. Photo \/ Supplied<\/p>\n

\u201cWhen Katana is thriving, she\u2019s thriving… when she\u2019s down, she can be beyond down,\u201d she said.<\/p>\n

\u201cKatana hasn\u2019t experienced any outside world other than the supermarket every now and then because I\u2019m afraid of her catching bugs which leads to hospital admissions.\u201d<\/p>\n

Life expectancy for those with Dnm2 congenital varies. Those diagnosed while in their infancy can expect reduced life expectancy due to risks of catching infections that they can struggle to battle.<\/p>\n

Many diagnosed in their adolescence or adulthood can have a normal life expectancy.<\/p>\n

Pohamara had six children – now aged 22, 20, 18, 15, 7 and 6 – before she became pregnant with Katana.<\/p>\n

She said the pregnancy was different from her previous ones – she didn\u2019t feel her unborn baby moving as often as she had felt her others.<\/p>\n

\"MumMum Angelica Poharama with her daughter Katana Morunga. Photo \/ Supplied<\/p>\n

Born three weeks premature in 2024, there were initially no alarm bells about Katana.<\/p>\n

But at 5 months old, doctors noticed hypertonia \u2013 increased muscle tone, causing her muscles to be stiff and resistant to movement, caused by damage to the brain or spinal cord.<\/p>\n

Blood tests and genetic testing led to the diagnosis of the rare hereditary mutated gene condition.<\/p>\n

Symptoms include muscle weakness, facial and eye muscle weakness (ptosis) and potential respiratory problems.<\/p>\n

\"AnAn ultra-rare genetic disorder has seen baby Katana Morunga hospitalised 30 times. Photo \/ Supplied<\/p>\n

Pohamara – who has whakapapa to Hokianga and Ng\u0101i Tahu – said Katana\u2019s diagnosis was devastating.<\/p>\n

\u201cI was blessed to have another girl after five boys and my older girl and for her to be our special baby.<\/p>\n

\u201cShe has brought a whole new perspective to our lives for the greater good.\u201d<\/p>\n

Katana has a weak immune system and minor infections can mean hospital trip<\/a>s.<\/p>\n

\"KatanaKatana Morunga is hugely loved by family as she battles a rare and uncurable disorder. Photo \/ Supplied<\/p>\n

Katana – known as Hiwa by her wh\u0101nau – has been in the hands of medical experts her entire short life, \u201cwho have been amazing\u201d, Pohamara said.<\/p>\n

Hospital admissions were normally at least five-day stays as Katana didn\u2019t present with symptoms like other children did, her mother said.<\/p>\n

\u201cWith her myopathy it\u2019s a lot harder for her to show that she\u2019s in distress until it\u2019s too late. And because I don\u2019t have a massive understanding of her condition, it makes things a lot harder for us.<\/p>\n

\n

I live in fear of germs as that\u2019s what could potentially end Katana\u2019s life.<\/p>\n

Mum Angelica Pohamara<\/p><\/blockquote>\n

\u201cShe\u2019s everyone\u2019s sparkle.\u201d <\/p>\n

Rare Diseases NZ said before Katana\u2019s case, it had not been previously contacted by any Dnm2 congenital myopathy sufferers in New Zealand.<\/p>\n

\u201cIt is feasible Katana is the only one in New Zealand based on international prevalence studies,\u201d a spokesperson said.<\/p>\n

\"BabyBaby Katana Morunga held by her mum Angelica and surrounded by her loving wh\u0101nau. Photo \/ Supplied<\/p>\n

\u201cNew Zealand does not systematically collect data on rare disorders, and Rare Disorders NZ has long been calling for rare disorders to be coded in the health system, with a particular focus on national health datasets being able to routinely collect rare disorder information. This would help us understand the prevalence of the diagnosed cases of various rare disorders in the population.\u201d<\/p>\n

Pohamara said despite Katana\u2019s monumental life hurdles, the wh\u0101nau tries to treat her as normally as they can.<\/p>\n

\u201cKatana is behind in her milestones, but she will get there in her own time when she\u2019s ready.<\/p>\n

\u201cI live in fear of germs as that\u2019s what could potentially end Katana\u2019s life.\u201d<\/p>\n

During stays at Starship Hospital<\/a>, Pohamara\u2019s older children and their father – who she is no longer with – help care for the younger children.<\/p>\n

Joseph Los\u2019e is an award winning journalist and joined NZME in 2022 as Kaupapa M\u0101ori Editor. Los\u2019e was a chief reporter, news director at the Sunday News newspaper covering crime, justice and sport. He was also editor of the NZ Truth and prior to joining NZME worked for Urban M\u0101ori organisation Wh\u0101nau Waipareira.<\/b><\/p>\n","protected":false},"excerpt":{"rendered":"Pohamara, 37, told the Herald \u201cthe slightest infection could be fatal\u201d. Katana Morunga was diagnosed with the genetic…\n","protected":false},"author":2,"featured_media":109827,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[272],"tags":[68397,68394,68399,2117,68398,23737,32169,18,1652,68392,5052,458,19,17,68395,24314,38557,57529,68396,3127,68393,133,1213,2046],"class_list":{"0":"post-109826","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-genetics","8":"tag-15monthold","9":"tag-alive","10":"tag-angelic","11":"tag-baby","12":"tag-cuddly","13":"tag-cute","14":"tag-disorder","15":"tag-eire","16":"tag-family","17":"tag-fights","18":"tag-genetic","19":"tag-genetics","20":"tag-ie","21":"tag-ireland","22":"tag-katana","23":"tag-keep","24":"tag-like","25":"tag-looks","26":"tag-morunga","27":"tag-other","28":"tag-rare","29":"tag-science","30":"tag-to","31":"tag-with"},"share_on_mastodon":{"url":"","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/109826","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/comments?post=109826"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/posts\/109826\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media\/109827"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/media?parent=109826"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/categories?post=109826"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/ie\/wp-json\/wp\/v2\/tags?post=109826"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}