A special series by Ian Brown about life with his disabled son
TORONTO, Nov. 30 /CNW/ - This Saturday, The Globe and Mail starts a
three-part series, The Boy in the Moon, by award-winning writer and
broadcaster Ian Brown. In intimate and moving detail, it tells the story of
Brown's eleven-year-old son Walker, who has CFC syndrome, one of the thousands
of rare "orphan syndromes" - a one-in-a-million genetic disorder that results
in extraordinary physical and cognitive impairment. Photos and video by Globe
and Mail photographer Peter Power will accompany the series.
In tomorrow's opening chapter, Brown describes Walker's infancy and
diagnosis and the years-long, daily and nightly ordeal of caring for a child
who cannot communicate, who cannot eat on his own, with a wild,
self-destructive streak yet also an impossible sweetness. "Raising a boy like
Walker," he writes, "is like raising a question mark."
In Part 2, on Saturday, Dec. 8, Brown goes on the road to meet other
families with CFC children, whose striking likenesses and differences come as
revelations; and he recounts his family's heartbreaking decision to find
another place for Walker to live for the rest of his life, giving him the care
he will need.
Finally, in the conclusion on Saturday, Dec. 15, Brown explores what a
child like Walker can teach us, both scientifically and as human beings.
Modern medicine now can save infants that short decades ago never would have
survived, but as a society we have not asked what measures should follow, to
make sure these new lives are worth living. Yet as Brown can say from
experience - in his inimitably lively and reflective style - such children can
also show us how "to live in the frightening, thrilling present" and "to see
the fleeting concerns of the 'normal' world, its obsession with status and the
opinions of others, in a less flattering light."
The Globe and Mail will also host a special Boy in the Moon section on
globeandmail.com with more photos, videos and information about CFC.
"Ian Brown has taken a courageous step by sharing Walker's story and by
doing so bringing us into the daily world of the severely disabled and their
families," said Edward Greenspon, Editor-in-Chief of The Globe and Mail.
"Ian's story is equally heart-wrenching and inspiring. It fills you with
admiration for the children and parents coping with CFC and other devastating
diseases, while also provoking difficult ethical and policy questions."
The Globe and Mail, Canada's national newspaper, is a division of
CTVglobemedia, a dynamic multi-media company, which also owns CTV Inc.,
Canada's number-one private broadcaster.
For further information:
For further information: or to arrange an interview with Ian Brown,
please contact: Olivia Yu at (416) 969-2718, firstname.lastname@example.org or Nancy
Evans at (416) 969-2704, email@example.com