“For two years, photographer Karen Haberberg has worked to shed light on children with rare genetic conditions through a book made up of stunning photos.”
New Photo Book Captures The Struggles and Triumphs of Kids with Rare Genetic Conditions
“In An Ordinary Day: Kids with Rare Genetic Conditions, acclaimed New York photographer and mom of two Karen Haberberg invites us into the lives of 27 families caring for kids living with rare genetic conditions. In doing so, Haberberg manages capture the struggles, love, and miracles that make up their lives with honesty and heart. And as I was reading, I felt as though I was right there with each family.”
“Haberberg mentions in her introduction the isolation felt by families of children living with rare genetic diseases— there is sometimes bullying, she says— and her thoughts are echoed in some of the families’ testimonies. Still, An Ordinary Day is about togetherness more than it is about loneliness. Elizabeth, Kelly’s mom, wrote the photographer a long letter when she received the pictures. Her last line was, “You are now family.”
These Very Ordinary Photos Challenge How we Look at “Special Needs” Kid
“In her new book, An Ordinary Day, acclaimed NYC photographer Karen Haberberg is spotlighting the little-seen world of families raising medically complex children. Though by definition a rare genetic disease is uncommon, these photos show just how ordinary life can still be in the midst of one.”
“A touching series of photos show what it's like to raise children with rare genetic conditions, and how some of them have grown into talented swimmers and cheerleaders despite their symptoms. Photographer Karen Haberberg has captured the lives of 27 children who have rare genetic diseases. Those conditions affect one out of 10 Americans, but 95 percent of them do not currently have an FDA-approved drug treatment.”
“A hundred years ago, Karen Haberberg’s book An Ordinary Day would be described as cultural anthropology. This book is a beautiful collection of photographs set next to intimate conversations with 27 children living with rare genetic conditions and their families. This volume sheds light on the extraordinary and unique experiences that often get overlooked. It does so in the simplest way: by shining a light on the ordinary, everyday moments of those who seem, on the surface, to be unlike ourselves.”
“Karen Haberberg was so determined to tell the story of children with rare genetic diseases that she brought her camera into some of their homes to capture their everyday lives. Her young subjects are afflicted with conditions such as Tay-Sachs disease, Marfan Syndrome and Polymicrogyria, which although they sound uncommon, affect one in 10 Americans altogether.” “Her photo book, “An Ordinary Day: Kids With Rare Genetic Conditions,” which benefits genetic research, will be released on October 17th. It takes us into 27 homes and through poignant photos with accompanying narrative text, illustrates not only the plight of the children, whose symptoms often include the inability to walk, talk or eat, but the struggles of their parents and siblings. Through their sick children, however, the families learn to appreciate each day and never take anything for granted, including simple accomplishments like getting their child on a school bus or into a McDonald’s.”
Also published here: http://www.westsidespirit.com/local-news/20170927/the-faces-of-rare-disease Also published here: http://www.otdowntown.com/local-news/20170927/the-faces-of-rare-disease
Photographer Captures Daily Life of Rare Families with Dignity and Grace
“These photos provide an honest portrayal of what it means to be a family living with these challenges every day. Life, for all of us, is not only made up from the most inspirational and tragic points. It’s also of all the small moments in between: riding a swing set, facing off your dad for the last cookie.”
“An estimated 25-30 million people in the United States live with a rare disorder. Almost 12% of everyone in the United States. One photographer is bringing their stories to light.
Karen Haberberg has dedicated the last two years to photographing children with rare genetic disorders. She has published them in a book titled “An Ordinary Day: Kids with Rare Genetic Conditions.”
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"Unless you walk in the shoes of these people who have kids with special needs ... you really have no idea what they're going through."
This Photo Series of Kids Who Have Genetic Diseases Is So Powerful
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By highlighting the world of each family, Haberberg allows us to see them as individuals not defined by the genetic conditions that often create stereotypes around them. While not shying away from showing the difficult moments and incredible perseverance each family must have to confront even the smallest of tasks, she also reminds us that we are still talking about children.
BOOKS FOR BETTER LIVING featured Karen Haberberg Photography | Photographer New York City's wonderful book spotlighting the lives of children with genetic diseases and their families, "An Ordinary Day"! It's an absolutely beautiful and touching book providing awareness of these children.