The Boy in the Moon

Writer Ian Brown has written a book about caring for his severely disabled son Walker. Brown agreed to tell his story to The National and allowed our camera crew rare access to life in his home with his family. Walker suffers from cardiofaciocutaneous syndrome, or CFC, an extremely rare syndrome only a few dozen people in the world have. And while the story is about Walker, his disability and difficult life, it's also about a father wrestling with the contribution children like Walker do make.


Producer: Carmen Merrifield

Editor: Sheldon Beldick

Camera: Andy Hincenbergs

Read more about this story from producer Carmen Merrifield.

Like a lot of Canadians, I know Ian Brown and Johanna Schneller as talented writers. I also confess to knowing them casually. We have mutual friends. I remember meeting them at parties over the years and for me they seemed to equal a kind of smart Toronto glamour.

Carmen Merrifield on the shoot for The Boy in the Moon.
When "The Boy in the Moon" came out this fall, I approached Ian about doing a TV treatment of the book. He agreed to trust us with his story. While it’s one thing to write about such intimate personal details, it’s quite another to do it with a camera rolling on your every thought. And yet he managed to do it.

Our project also included a conversation between Ian and his wife Johanna. It was fascinating to watch two so clever and verbal people engage with each other; like two tuning forks humming at the same time. It was impressive to see them talk so candidly about what they’ve been through as a couple and as a family. And it's heartening to realize they’ve come through it still keen to know what each other thinks and still able to make each other laugh.

It’s not just that Ian has written a beautiful book, because for sure it’s that. It’s the honesty and how much Ian is prepared to put out there about his life with Walker that I admire so much. What’s pleasantly surprising is that it’s not a relentlessly sad tale. There’s also a lot of humour and joy to the story of living with Walker. I have to believe it will be incredibly consoling to any parent raising a disabled child. Or for anyone who appreciates a thoughtful writer who knows how to tell a story.