This booklet is for parents who’ve recently learned their child has a
progressive neuromuscular disease. Although medical interventions and
technology have advanced dramatically over the years, and real hope exists for
cures and treatments, neuromuscular disease still inflicts a heavy emotional
load on parents and families, sometimes pulling them apart.
We hope that the strategies, advice and encouragement contained in this booklet
will enable you to develop effective coping patterns that strengthen you and
your family.
We’re grateful to Sylvia E. McGriff for writing the original copy for this
booklet in 1981, in such basic, practical terms that its message is timeless.
McGriff, a licensed psychologist, holds a Ph.D. in clinical psychology.
In updating this booklet, we’re also grateful to Scott Bennett for writing
the foreword, and to MDA health care services coordinators and support group
leaders. Finally, we thank all the parents and children who have so generously
shared their experiences and knowledge so that you’ll know you’re
not alone.
Muscular Dystrophy Association
All of the artwork in this booklet is from the MDA Art Collection and was
created by children with neu-romuscular diseases.
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