The magazine of the photo-essay
Jan 2018 back issue
An Ordinary Day
“A free, really high quality photo-essay magazine.  Fabulous!” Stephen Fry. British actor, writer and film maker
by Karen Haberberg
An Ordinary Day documents the stories of 27 courageous families living with children with rare genetic conditions. Throughout the pages, a trove of treasure is revealed; a narrative of struggles failed and battles won. These brave children include Ethan, a mute child, as he learns to make his first sound; Jonathan, a 9-year-old, as he is finally able to eat with a spoon and; Maddy, a 5-year-old, as she takes her first step after years of crawling. These are all tasks that are taken for granted by families and children without these disorders, but are immense accomplishments and triumphs for children with rare genetic diseases. “In these moving photos and narratives, Karen Haberberg locates the joy
and beauty in children whose lives are too easily relegated to darkness. Her images are not only humane, but also celebratory. They proceed from a great generosity of spirit and an intuitive sense of human dignity.” Andrew Solomon, PhD professor of clinical psychology at Columbia University, Pulitzer nominee and author of Far from the Tree: Parents, Children, and the Search for Identity
Darus feels more comfortable in small spaces.
Ian is a fun loving boy who has mcap and pmg which involve the skin, connective tissue and brain causing a disproportionately large head and capillary malformations on the skin.
Brian’s body systems will deteriorate and/or fail as he gets older.
Cassie’s Marfan Syndrome could have been fatal if doctors had not caught it in time.
Wyatt is nonverbal, cannot eat by mouth, and is blind in one eye but still manages to enjoy nature.
Ethan will need lifelong care as a result of his condition.
Despite the metal rods along Cassie’s spine, she is a great swimmer.
Though he is capable of eating soft foods, Jonathan generally does not like to eat and is not able to self-feed.
Louis suffers from Ehlers-Danlos syndrome and Pots. His mom worries about him dislocating bones or passing out from his heart rate suddenly dropping.
Because Shaan cannot walk or speak much, his parents struggle to find activities he can participate in.
Jamesy often sleeps in a hyperbaric chamber to help improve his breathing, and his dad always joins him.
Clara, has tuberous sclerosis which causes tubers to grow in various parts of her brain and body. “She’s in there, that there’s so much more going on than we can see. Once you clue into that and you start to see those moments, it makes it much easier to overcome the depression and the lack of expectation of her ever being something, because you know, there’s more in there when you see those moments. It gives you hope and happiness.” – Joe, Clara’s dad
Though Gianna has had 26 surgeries, she is still able to participate in her town’s general cheering squad.
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