An Ordinary Day: Kids with Rare Genetic Conditions - Tapa dura

"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." -Daily Mail

"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."
-Refinery29

"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." -Books For Better Living

"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." -Patient Worthy

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ABC News, Cosmopolitian, Daily Mail, New York Family, PDN, Popsugar, Today's Parent.

An Ordinary Day is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all cost. 1 in 10 Americans are living with a rare genetic condition. The conditions that rule the lives of these families are often overlooked by society, but for millions of people it is a matter of foremost priority. This book sheds an important and compassionate light on these existences.

Life often presents challenges that seem insurmountable. Children are not exempt from this, but often through their innocence and will we can find inspiration and hope. An Ordinary Day displays unforgettable photographs set against intimate conversations, documenting the lives of 27 children living with rare genetic conditions.

Readers will fall in love with these children, share in their struggles and victories, and celebrate the life-affirming spirit captured in every image. The book invites us to connect with kids like Ethan, a nonverbal 7-year-old who learns to sign to communicate his needs, 5-year-old Madison who has taken her first steps after years of crawling, and Jonathan, a 9-year-old boy who finally learns to eat with a spoon after many failed trials. Tasks often taken for granted, are profound triumphs for children afflicted with rare genetic conditions.

The every day moments captured in An Ordinary Day inspire awareness and empathy, while highlighting the commonalities between families with rare genetic conditions, and more deeply between us all. Poignant and revelatory, An Ordinary Day illuminates what it means to be a family.