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Tauranga boy pleads for Trikafta drug to ease cystic fibrosis 19 Feb, 2021 10:00 PM 7 minutes to read Harry Oxenham has cystic fibrosis and hopes a treatment drug will change his life. Photo / George Novak Harry Oxenham has cystic fibrosis and hopes a treatment drug will change his life. Photo / George Novak It s a little like the sound of a dishwasher or the washing machine. The sound is relentless - constantly filling the silence of thought as Harry s parents, Aly, Dan and I talk. Ironically, relentless is how Aly describes the half-hour treatment regime that sees Harry using three different mouthpieces, to achieve three different results for the sticky mucus on his lungs, otherwise known as cystic fibrosis. ....
Samantha Motion: The superhuman strength of sick kids and their families 13 Feb, 2021 01:26 AM 4 minutes to read Keri and Ryan Topperwien on the beach with their son, Chace. Photo / File OPINION There are a few moments from my decade or so as a reporter that will stay with me forever. One is the funeral of Chace Topperwien. Chace died from acute myeloid leukemia in 2012, a few months after his third birthday. His Whakatāne parents, Ryan and Keri, had shared his story publicly as part of their drive to find a bone marrow match, and to grow the small pool of Māori donors on the registry. ....
Rotorua 11-year-old begs for Trikafta to be free of cystic fibrosis 12 Feb, 2021 05:00 PM 6 minutes to read Leah Rumney who wants Trikafta for Leah s cystic fibrosis Leah Rumney s Christmas wish was to be free of cystic fibrosis. But it s a wish which broke her mother s heart because she knew she couldn t make it happen for her 11-year-old. Not without Trikafta - a breakthrough treatment Cystic Fibrosis NZ says is widely heralded as having the potential to turn cystic fibrosis from a life-threatening condition to a manageable condition. But it is not currently registered and funded in New Zealand. And at more than $470,000 a year the drug is simply not attainable to many with cystic fibrosis, including the Rotorua girl. ....