One of our heart kids, Maddison Blitvich has featured prominently in the news media in the last couple of weeks. As well as being born with a CHD, Maddison is the only child in New Zealand with a very rare genetic disorder called Pfeiffers Syndrome. Pfeiffer children are characterized by the premature fusion of certain bones of the skull which affects the shape of the head and face. Rachael has been receiving wonderful support from the Heart Kids team in West Auckland and only recently decided to tell her story. Since the video and article went to print she has been inundated with support, encouragement and well wishes from people in New Zealand and around the world.
Created on: 3 February 2018