An Ordinary Day: Kids with Rare Genetic Conditions

Poignant, powerful, life affirming – An Ordinary Day – will connect families with children who have rare genetic disorders to one another and to the world.

Rare genetic diseases are pretty common — 1 out of 10 Americans is affected, while 95% do not have an FDA approved drug treatment.

An Ordinary Day gives a voice to families raising children with rare genetic disorders. Despite the complexity of their individual circumstances, the book, featuring photographs, interviews and a list of informative resources, captures family life in all its simplicity and humanity.

An Ordinary Day displays photographs set against intimate conversations, presenting the stories of 27 families living with children with rare diseases. Readers will fall in love with each child, share in their enormous struggles and small victories, and celebrate the life-affirming spirit captured in every image. Throughout the pages, a trove of treasure is revealed, a narrative of struggles failed and battles won. These brave children include Ethan, a mute child, as he learns to make his first sound; Jonathan, a 9- year-old, as he finally is able to eat with a spoon after many failed trials and; Maddy, a 5-year-old, as she takes his 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 with rare genetic diseases. The intimate portraits in An Ordinary Day will inspire hope, empathy and appreciation in all of us.

The chronic illness of a child requires a family’s total commitment every moment of every day in our modern society. It requires precious time to battle insurance companies, search for support and very often struggle with everyday tasks. But coping can also provide moments of profound dignity, grace, and joy. An Ordinary Day will provide a record of such moments, illuminating what it means to be a family, as well the meaning of humanity, regardless of health or lifespan.

An Ordinary Day has the full support of all the featured families and their social networks including Global Genes, NIH, NORD, MIT/Harvard’s Genome Project at the Broad Institute, and the 27 other specific organizations dedicated to each disorder (ranging from hundreds of thousands to millions of people). However, rare genetic diseases touch many more lives than just those that are directly affected by them: friends and extended family members.

Published 2017 by powerHouse books.

Available for Pre-Order




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