An Ordinary Day: Kids with Rare Genetic Conditions

An Ordinary Day displays photographs set against intimate conversations, presenting the stories of 27 families living with children with rare genetic conditions. Readers will fall in love with each child, share in their struggles and victories, and celebrate the life-affirming spirit captured in every image. The book–featuring interviews, along with unforgettable photographs–presents a transfixing narrative of struggles failed and battles won. These brave children include Ethan, a 7-year-old who is nonverbal, as he learns to sign to communicate his needs; Jonathan, a 9-year-old, as he finally is able to eat with a spoon after many failed trials; and Madison, a 5-year-old, as she takes her first step after years of crawling. These are all tasks that are taken for granted by families and children without these disorders, but are immense accomplishments and triumphs for children afflicted with rare genetic conditions. The intimate portraits in An Ordinary Day will inspire hope, empathy, and gratitude in all of us.

Piercing and unforgettable, An Ordinary Day illuminates what it means to be a family.

Available for Pre-Order



Hardcover: 176 pages

Publisher: powerHouse Books (September 26, 2017)

Language: English

ISBN-10: 1576878619

Shipping Weight: 1.2 pounds



The kickstarter was a huge success. I met my goal!


Karen Haberberg has spent twelve years as a professional photographer documenting stories of human resilience: the memories of a Holocaust survivor, the daily life of a developmentally disabled young adult working on a farm, and more recently, kids with rare genetic conditions. Karen’s parents lost their first child, Rafi, at age three; he died of Tay–Sachs disease before Karen was born. The memory of the child who died so young is never far from the family’s collective consciousness, and inspired the work on this project.


Karen is a New York City based lifestyle and portrait photographer. In addition to her freelance work, Karen teaches at New York University, the 92Y, the JCC of Manhattan and the International Center of Photography (ICP).

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. Karen 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.

Her photography has been shown in numerous gallery exhibitions, magazines and newspapers including the New York Times, The Wall Street Journal, The Daily News, Huffington Post, Time Out NY, Daily Mail, Cosmopolitan, New York Family Magazine, Forbes, and Fit Pregnancy. Her work was recently featured on ABC News and NY1.

Karen 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.

An Ordinary Day

Kids with Rare Genetic Conditions

Karen Haberberg