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An Ordinary Day by Karen Haberberg

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An Ordinary Day

Kids With Rare Genetic Conditions

Karen Haberberg

powerHouse Books · Print & ebook · October 24, 2017

Reading lane: Physical Disabilities

At a Glance

Who It's For

For readers interested in the lives of children with rare genetic conditions and their families.For readers drawn to intimate photographs and conversations about everyday triumphs.

Book Details

Authors
Karen Haberberg
Publisher
powerHouse Books
Published
October 24, 2017
Format
Print & ebook
Theme
Physical Disabilities · Special Needs
Reading lane
Physical Disabilities

Affinity

Publisher Categories

  • Parenting Special Needs

  • Genetic Disorders

  • Photo Essays & Documentary

About This Book

An Ordinary Day is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all cost. 1 in 10 Americans are living with a rare genetic condition. The conditions that rule the lives of these families are often overlooked by society, but for millions of people it is a matter of foremost priority. This book sheds an important and compassionate light on these existences. Life often presents challeng...

Read full description

An Ordinary Day is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all cost. 1 in 10 Americans are living with a rare genetic condition. The conditions that rule the lives of these families are often overlooked by society, but for millions of people it is a matter of foremost priority. This book sheds an important and compassionate light on these existences. Life often presents challenges that seem insurmountable. Children are not exempt from this, but often through their innocence and will we can find inspiration and hope. An Ordinary Day displays unforgettable photographs set against intimate conversations, documenting the lives of 27 children living with rare genetic conditions. Readers will fall in love with these children, share in their struggles and victories, and celebrate the life-affirming spirit captured in every image. The book invites us to connect with kids like Ethan, a nonverbal 7-year-old who learns to sign to communicate his needs, 5-year-old Madison who has taken her first steps after years of crawling, and Jonathan, a 9-year-old boy who finally learns to eat with a spoon after many failed trials. Tasks often taken for granted, are profound triumphs for children afflicted with rare genetic conditions. The every day moments captured in An Ordinary Day inspire awareness and empathy, while highlighting the commonalities between families with rare genetic conditions, and more deeply between us all. Poignant and revelatory, An Ordinary Day illuminates what it means to be a family.

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