{"id":452290,"date":"2026-05-30T06:23:10","date_gmt":"2026-05-30T06:23:10","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/452290\/"},"modified":"2026-05-30T06:23:10","modified_gmt":"2026-05-30T06:23:10","slug":"cystic-fibrosis-breakthrough-christchurch-family-celebrate-trikafta-milestone","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/452290\/","title":{"rendered":"Cystic fibrosis breakthrough: Christchurch family celebrate Trikafta milestone"},"content":{"rendered":"

\u201cOnce Trikafta came through for us, we knew we had to go big!\u201d enthuses Eddie, who adds Noah loved every minute of his three-day celebration.<\/p>\n

Trikafta is the first drug to treat the underlying cause of CF and has been funded in New Zealand for people 6 years and over since 2023. Desperate to get help for their son, at one stage, the young couple thought about moving to England or Australia to access it.<\/p>\n

\u201cWhy wouldn\u2019t you do everything you can to get lifesaving medication for your child?\u201d asks Emily, 30.<\/p>\n

Eddie adds, \u201cLuckily, New Zealand came on board, and we can stay here and continue to be proud Cantabrians!\u201d<\/p>\n

Eddie and Emily \u2013 who\u2019ve been together for 13 years and married for three \u2013 got their first inkling something was amiss with Noah\u2019s health at her 20-week scan.<\/p>\n

\u201cBecause it\u2019s an inherited genetic condition, Eddie and I were sent for blood tests, and were shocked to find we were both carriers,\u201d explains Emily. \u201cThat meant Noah had a 94% chance of having CF<\/a>, which was confirmed by tests a few days after he was born. It wasn\u2019t the start to parenthood we\u2019d envisaged.\u201d<\/p>\n

\"EddieEddie and Emily got their first inkling that something was amiss with Noah\u2019s health at her 20-week scan. Photo \/ Selina Nunn<\/p>\n

The couple spend about two hours a day guiding Noah through a complex care routine, which includes nebuliser and cupping sessions each morning and evening to manage his mucus, plus regular doses of creon, a pancreatic enzyme replacement and other vitamins throughout the day.<\/p>\n

While some CF children struggle to put on weight as the condition makes it difficult for their bodies to absorb protein and fat, Emily says they\u2019re lucky Noah has been in the 98th percentile for his size since he was born.<\/p>\n

\u201cHe\u2019s huge!\u201d she grins, adding his dietary management has still been the biggest learning curve for the couple. \u201cThe creon has to be taken with food containing a specific amount of fat. A lot of mathematics goes into it.\u201d<\/p>\n

To avoid bugs and germs, they\u2019re also careful where they take Noah.<\/p>\n

\u201cSwimming pool changing rooms are a no-no, but there are so many places Noah can go and things he can be involved in,\u201d explains preschool teacher Emily, adding they\u2019re lucky to have \u201cincredible support\u201d from family, friends and the team at Cystic Fibrosis New Zealand<\/a>.<\/p>\n

Eddie, who manages a Christchurch preschool, says Noah is an \u201cabsolute champ\u201d for the way he accepts his routine and they\u2019re hopeful it\u2019ll get easier in time now Trikafta has been added to the mix.<\/p>\n

\"TheThe drug will help Noah live healthier. Photo \/ Selina Nunn<\/p>\n

\u201cConsidering everything he\u2019s got going on, Noah\u2019s a pretty happy-go-lucky kid,\u201d Eddie tells.<\/p>\n

The active boy loves to sing, putting the new microphone stand he got for his birthday to good use.<\/p>\n

\u201cNoah\u2019s obsessed with Justin Bieber and, after watching some of his Coachella videos, has been lining up his teddies to watch him sing,\u201d smiles Emily. \u201cHe also got a doctor\u2019s kit from my brother and already knows what each piece does, which is not typical for your average 2-year-old!\u201d <\/p>\n

Although it\u2019s still early days, Trikafta should help to thin Noah\u2019s mucus, leading to far fewer infections, less scarring and a significantly lower risk of him requiring a lung transplant. It will also assist his body to absorb nutrients better.<\/p>\n

\"\"<\/p>\n

Best of all, the drug will help Noah live healthier, with his life expectancy increasing around 15 or 20 years.<\/p>\n

Emily enthuses, \u201cWe\u2019ve heard some great stories about people on Trikafta overseas who are moving out of home, having relationships and kids, and even running marathons and Iron Mans. That\u2019s what we hope for Noah \u2013 that one day he\u2019ll get to live like a normal Kiwi kid, doing all the same things as his friends.\u201d<\/p>\n

May is Cystic Fibrosis Awareness month. To learn more, go to cfnz.org.nz.<\/p>\n","protected":false},"excerpt":{"rendered":"\u201cOnce Trikafta came through for us, we knew we had to go big!\u201d enthuses Eddie, who adds Noah…\n","protected":false},"author":2,"featured_media":452291,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[9331,1443,2851,665,52364,33737,230132,177,75031,4487,181857,104507,6119,2109,19084,1445,230134,6093,4960,2250,22643,3259,3025,111,139,41815,69,5493,11663,8244,79230,8808,145,1961,150065,150430,28066,25809,6123,102,230133],"class_list":["post-452290","post","type-post","status-publish","format-standard","has-post-thumbnail","category-technology","tag-chance","tag-about","tag-also","tag-around","tag-beginning","tag-breakthrough","tag-cakesmeared","tag-celebrate","tag-celebrations","tag-christchurch","tag-cousins","tag-cystic","tag-faces","tag-family","tag-fibrosis","tag-friends","tag-harringtonashton","tag-little","tag-live","tag-longer","tag-marked","tag-milestone","tag-most","tag-new-zealand","tag-newzealand","tag-noah","tag-nz","tag-open","tag-presents","tag-recent","tag-ripping","tag-running","tag-technology","tag-this","tag-toddlers","tag-trikafta","tag-true","tag-turning","tag-while","tag-with","tag-youngster"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/452290","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=452290"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/452290\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/452291"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=452290"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=452290"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=452290"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}