LUKE MCPAKE/RNZ The father of a young boy with a rare mutation of cystic fibrosis is relieved and excited that his son may have the chance to live decades longer than predicted. READ MORE:* Couple tow coffin to Wellington in bid for more medicine funding* A mother, Pharmac, and the $300,000 fight to save her daughter* Mother's plea for cystic fibrosis wonder drug to become public funded* Cystic fibrosis sufferers put their hope in a change of Government* Funding for new cystic fibrosis drug rejectedPharmac declined the initial application back in 2014 due to limited evidence of its benefits for cystic fibrosis – a rare disorder that damages the lungs and digestive system. One of the people who fought for Kalydeco to be funded is Eddie Porter whose two and half-year-old son Otis has cystic fibrosis. LUKE MCPAKE/RNZ Emma Porter and her son Otis, who has cystic fibrosis. "The life expectancy as it stands in New Zealand for someone [with cystic fibrosis] is 37 years, and the sky's the limit for people on Kalydeco.

Source: Stuff January 24, 2020 09:33 UTC