By Karen Haberberg
I am the sister of a brother who died of a genetic, neurodegenerative disease before I was born. I still witness the pain my parent’s experience from the loss of their child to Tay Sachs Disease.
More recently, my best friend’s child was stricken with “Angelman Syndrome.” Watching her struggle to find a diagnosis while her hopes and dreams shifted for her son, Ethan continues to be challenged with new issues and often times it’s heartbreaking. How many people have heard of this rare disease, or the many diseases that exist and known only after the have struck; some at birth and infancy, some forms at late infancy, juvenile and adults forms?
These were the situations in previous years when groups of parents like mine determined to make their children’s’ lives more meaningful than their personal meaning to them and their families. They sought out one another; their purpose: to raise funds to stimulate research that would make treatment and cures a reality for other families’ children.
Truly, science is in a “genetic age.” Prenatal diagnosis is possible and carrier detection possible for some, because a rare disease called Tay-Sachs and its allied diseases did just that. The lessons learned is “rare” disease has vast and penetrating practical knowledge for all diseases. I was born because of my parents’ braver, positive thinking, and science in prenatal diagnosis with amniocentesis. I was one of the first 300 babies to receive an amniocentesis in the United States.
Today, what still exists are too many families that still bare the unbelievable agony of a genetic disease diagnosis without the benefit of an immediate reservoir of source information and equally important, information of personal experiences of parents and families who had lived the day by day, month by month and sometimes year by year lives that they were presently living and, had survived. They are out there throughout the world and needlessly alone in their isolation and pain.
As a professional photographer, I have photographed many children and the joyous families at the time of birth and through their years of happiness and growth. Often, I have thought of those families of children who were not gifted with the joy of health. It prompted me to put forth the offer of a private photographing session to any such family. I was totally unprepared for the impact of this gesture for the parents of a stillborn child: A modicum of solace to their sorrow and loss. Their gratitude overwhelmed me.
My purpose of recording and photographing the experiences individuals who faced the life-changing impact of genetic disease, their thoughts, and their survival can mitigate another’s isolation. The experiences recorded would show varied and personal difference and express perhaps different resolutions. It may reflect a philosophy that will make for a full and purposeful life for them if not for their affected child whom they will always carry with them.
Karen Haberberg Bio
Karen Haberberg is a portrait photographer specializing in capturing natural moments. Her photographs have been exhibited in various New York City galleries and published in magazines and newspapers including New York Family Magazine, Fit Pregnancy, The Wall Street Journal, and Time Out New York. Karen Haberberg has also curated numerous exhibitions and worked with well known photographers such as Annie Leibovitz, Bruce Davidson, Elliot Erwitt, Joyce Tenneson, Gillian Laub, among others; She believes her extensive experience as a curator is one reason she is able to be so helpful to clients about how best to size, frame and position photographs for maximum impact.
Karen studied photography at some of the best programs in the country: She holds a MA degree in Art and Photography from the International Center of Photography, as well as a MA degree in Educational Communications and Technology from New York University. Karen co-founded Media Pros, an organization designed for media professionals in New York. She received her BA from Brandeis University in 1995 where she graduated Cum Laude. Karen now teaches photography at NYU, the International Center of Photography, 92Y and the JCC in Manhattan.
Karen and her husband Bob live in Manhattan, with her two children who are mostly good about posing. Her most acclaimed personal photography project, My Father, captures her Dad’s struggle and ultimate triumph as a Holocaust survivor.