The Boy in the Moon

Ian Brown

A father’s candid, heart-wrenching account of raising, loving and trying to connect with and gain insight into his severely disabled son.

A journalist for The Globe and Mail, Brown wrote a series of pieces about his son Walker for the newspaper in 2007. The book, a multiple-award winner in Canada when it was first published in 2009, is largely based on those pieces, which in turn had their beginnings in a journal the author had kept. Brown’s son Walker was born with cardiofaciocutaneous (CFC) syndrome, an extremely rare genetic disorder affecting only a few hundred children around the world. The author writes of the struggle to raise a self-destructive child who could not speak and suffered numerous physical deformities and medical problems, recounting in sometimes harsh detail the onerous daily routine of caring for the boy and the strains this put on his marriage. However, this is much more than a moving journal of life with a disabled child; it is about Brown’s quest to understand his son and his son’s condition. He seeks out and profiles other families with CFC children, interviews a genetic researcher who found mutations in three genes related to the disorder, looks for clues to CFC through an MRI of Walker’s brain and travels to France to visit L’Arche, a faith-based organization that operates communities for the developmentally disabled. Brown’s story of the frustrations of trying to do the best for his child and find a safe place for him in a world uncomfortable with people with disabilities reveals the failures of society to establish a coherent system to help the families of disabled children. After years of at-home care, the author found a satisfactory group home for Walker, now 13, where he appears to be thriving.