I approached Neave's father to request a portrait of her in her yellow “ Gday” one piece. After agreeing to the photograph I learned about a very rare brain disease that Neave and her family had been battling for the last year. A disease called Chiari Malformation , in which the skull becomes too small for the brain. Whats not seen in this picture are the 30 plus stitches holding her head together. She also had a part of her spine removed to make room for her brain.
Sometimes the camera is a powerful tool in that it has the power to validate and record moments in time like this.