Photography Book ‘An Ordinary Day’ Portrays Children with Rare Genetic Diseases

Photography Book ‘An Ordinary Day’ Portrays Children with Rare Genetic Diseases
The New York portrait photographer Karen Haberberg has taken thousands of pictures of families, couples, pregnant women, teenagers, and fashion models — not to mention dramatic landscapes from Iceland to Indonesia. She’s also done several personal projects, including “Benjamin,” a haunting portrayal of her father’s experience as a Holocaust survivor in Poland, and “Kenny,” which profiles a young farmworker with congenital disabilities. Haberberg’s latest project focuses on children with rare genetic disorders. “An Ordinary Day” presents the stories of 27 families with children such as Ethan, a boy with Angelman syndrome; Tara, a teenager with both Crohn’s disease and juvenile rheumatoid arthritis; and Jamesy, a 7-year-old with Duchenne muscular dystrophy. The hardcover volume, which went on sale Oct. 24, retails for $45. Proceeds will go toward research on treatments for rare genetic disorders. The book “gives a voice to families raising children with rare genetic disorders," Haberberg’s website says. "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.” Haberberg said the idea for her ambitious project sprang from deep personal loss. “My brother died of Tay-Sachs disease in 1969, so I was always interested in genetics,” she told IBD News Today in a phone interview from New York. “More recently, my best friend had a child with Angelman syndrome, and in watching her struggle and hearing day to day what she was going through, I felt like I needed to do something for this community
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