11 September 2020 - The mother of two young boys with a rare disease is begging PHARMAC to fund a medication which could change her children's lives.
Lani McLeod's two sons, two year old Lincoln and 11 week-old Harlan, both have spinal muscular atrophy - a neuromuscular disease which can rob a human of their most basic functions such as sitting, standing, and even breathing.
The one drug which could change her children's lives, Spinraza, is unfunded.