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An Ordinary Day: Kids with Rare Genetic Conditions
Photography by Karen Haberberg (Author)
An Ordinary Day is a documentary photography project exploring the lives of children living with rare genetic conditions and the families who care for them. Inspired by my own family history—my brother died from Tay-Sachs disease before I was born—I wanted to look beyond the diagnosis and show these children as individuals with personalities, dreams, challenges, and everyday lives.
I photographed and interviewed 27 children and their families, spending time with them in their homes and daily environments. Their stories revealed the challenges of rare disease, but also the humor, resilience, love, and small victories that make up family life.
The project became a 176-page book published by powerHouse Books, and was exhibited and featured by outlets including ABC News, NY1, The Huffington Post, Daily Mail, Cosmopolitan, and Refinery29.
At its heart, An Ordinary Day is about seeing the person beyond the diagnosis and finding the extraordinary in everyday life.
