The Boy in the Moon

Parents tell the story of struggling to care for, and trying to understand, their children who suffer from a rare and complex genetic disorder, CFC.

Toronto Globe and Mail writer Ian Brown and his family have cared for their 11-year-old son, Walker, born with a rare and complex genetic disorder, CFS. Unable to communicate or even to eat on his own, mentally delayed, fragile, sickly, sometimes destructive, sometimes joyful, Walker is a mystery made possible by modern medicine. In this remarkably frank and intimate story, Brown describes his struggle to care for and to understand his son – and, through him, the value of any human life.

While raising a child with a severe disability appears daunting to those outside this experience, it is heartening to hear parents speak of the joy such children bring them. The children in this story suffer from the rare cardio-facio-cutaneous syndrome (CFC). Storytellers Peter Power and Jayson Taylor let the parents tell the story of setting up their lives to look after their youngsters 24/7, if that’s what it takes. In the last video, a physician specializing in genetics, who has researched CFC, gives viewers important scientific context for this incredibly moving story.

Length: Six videos run from about four to eight minutes each

Documentaries (video, still, audio, editing): Peter Power and Jayson Taylor

Written story by Ian Brown

VIEW: http://www.theglobeandmail.com/boyinthemoon

SEE ALSO:

Part 1: Walker, the Unexpected Son

Chapter 1: 1,001 Nights

Chapter 2: Raising a Question Mark

Chapter 3: How to Say Love in “Click”

Chapter 4: The Quiet Island

Chapter 5: Yes, We Have No Bananas

Part 2: Finding Walker’s Place