An Ordinary Day: Kids With Rare Genetic Conditions

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.

Karen Haberberg is a New York City-based portrait photographer. Her photography has been shown in numerous gallery exhibitions, magazines, and newspapers including The New York Times, Wall Street Journal, The Daily News, Huffington Post, Time Out NY, Daily Mail, Cosmopolitan, New York Family, and Fit Pregnancy. Her work was recently featured on ABC News and NY1. In addition to her freelance photography work, Haberberg teaches photography at the 92Y and JCC of Manhattan. For nearly a decade, she served as the Director of Photography and Digital Media at the Jewish Community Center in Manhattan, where she spearheaded photography related programming for children and adults. Haberberg has also curated numerous exhibitions and collaborated with well-known photographers such as Annie Leibovitz, Elliot Erwitt, Joyce Tenneson, Gillian Laub, Bruce Davidson, among others. Haberberg holds a BA from Brandeis University and earned her MA in Art and Photography from the ICP. She lives in Manhattan with her husband and two children Maya and Liam. For more information, visit Karen's website at http://www.karenhaberberg.com.