AN ORDINARY DAY

KIDS WITH RARE GENETIC CONDITIONS

A documentary photography Book by Karen Haberberg

Published by powerHouse Books

An Ordinary Day documents 27 children and their families living with rare genetic diseases. Through intimate photographs and interviews, the project looks beyond the diagnosis to the everyday lives, relationships, and experiences of each family.

My connection to rare disease is personal. My brother died from Tay-Sachs disease before I was born, and that experience shaped my desire to tell the stories of families living with rare genetic conditions. I wanted to photograph children as children—not simply as patients—and show the lives, love, and connections beyond a diagnosis.

Photography · Interviews · Book · Exhibitions

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Darus, Phelan-McDermid Syndrome (5 Images)

Darus, Phelan-McDermid Syndrome (5 Images)
Addie, Related Intellectual Disability Syndrome (6 Images)

Addie, Related Intellectual Disability Syndrome (6 Images)
Ethan, Angelman Syndrome (7 Images)

Ethan, Angelman Syndrome (7 Images)
Wyatt (3 Images)

Wyatt (3 Images)
Maddy, Beta-propeller protein-associated neurodegeneration (BPAN) (3 Images)

Maddy, Beta-propeller protein-associated neurodegeneration (BPAN) (3 Images)
Kelly, PACS1 Syndrome (7 Images)

Kelly, PACS1 Syndrome (7 Images)
Clara (6 Images)

Clara (6 Images)
Louis, Ehlers-Danlos Syndrome (6 Images)

Louis, Ehlers-Danlos Syndrome (6 Images)
Miriam & Mohammad, NGLY1 (8 images)

Miriam & Mohammad, NGLY1 (8 images)
Ian, MCAP & PMG (7 Images)

Ian, MCAP & PMG (7 Images)
Sean, ALD, X-linked Adrenoleukodystrophy (7 Images)

Sean, ALD, X-linked Adrenoleukodystrophy (7 Images)
Quinn, Polymicrogyria (2 Images)

Quinn, Polymicrogyria (2 Images)
Cassie, Marfan Syndrome (5 Images)

Cassie, Marfan Syndrome (5 Images)
Emily, Sanfilippo Syndrome (7 Images)

Emily, Sanfilippo Syndrome (7 Images)
Ava, SATB2-Associated Syndrome (4 Images)

Ava, SATB2-Associated Syndrome (4 Images)
Gianna, 22q11.2 Deletion Syndrome (4 Images)

Gianna, 22q11.2 Deletion Syndrome (4 Images)
Brian, Ataxia -Telengiectasia (4 Images)

Brian, Ataxia -Telengiectasia (4 Images)
Josie, FoxG1 (4 Images)

Josie, FoxG1 (4 Images)
Zoey, Chromosome Deletion Syndrome of the 2Q32 Chromosome (7 Images)

Zoey, Chromosome Deletion Syndrome of the 2Q32 Chromosome (7 Images)
Jonathan, Mowat-Wilson Syndrome (4 Images)

Jonathan, Mowat-Wilson Syndrome (4 Images)
Nico, Evans Syndrome (2 Images)

Nico, Evans Syndrome (2 Images)
Mackenzie, Tay Sachs (4 Images)

Mackenzie, Tay Sachs (4 Images)
Jamesy, Duchene Muscular Dystrophy (4 Images)

Jamesy, Duchene Muscular Dystrophy (4 Images)
Brynn, Rett Syndrome (5 Images)

Brynn, Rett Syndrome (5 Images)
Daniel, Glass Syndrome (3 Images)

Daniel, Glass Syndrome (3 Images)
Alexandra & Jonna, Gastroparesis, Crohns & Rheumatoid Arthritis (6 Images)

Alexandra & Jonna, Gastroparesis, Crohns & Rheumatoid Arthritis (6 Images)
Elena, BRWD3 (5 Images)

Elena, BRWD3 (5 Images)

  • "Photographer Aims to Raise Awareness for Rare Illnesses Through a Photobook"

    ABC NEWS

  • Powerful Photos Celebrate Families Raising Children with Rare Genetic Disorders “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. “

    MYMODERNMET

  • “How My Brother's Early Death Inspired Me to Capture Families With Rare Conditions”

    THE MIGHTY

  • This Photo Series of Kids Who Have Genetic Diseases Is So Powerful

    COSMOPOLITAN

  • 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 Life, for all of us, is not only made up from the most inspirational & 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

  • “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.New List Item

    DAILY MAIL

  • Photographer Highlights Kids With Rare Genetic Conditions In Stunning Photos.New List Item

    HUFFINGTON POST

  • 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.”

    FEATURE SHOOT

  • These Very Ordinary Photos Challenge How we Look at “Special Needs” KidsDescription goes here

    REFINERY 29

  • “An Extraordinary Storyteller:"

    NY FAMILY MAGAZINE

  • The intimate photos in An Ordinary Day share an inside look into the daily triumphs and challenges of kids with rare genetic conditions.

    TODAYS PARENT‍ ‍

Featured in

ABC Good Morning America logo with yellow text on a blue background.
Two people sitting on a striped sofa in a bright room with brick walls and large windows, being filmed for a documentary or interview, with a camera visible on the left side and a logo reading 'more to Parkinson's' in the bottom left corner.
A family of three sitting together on a booth in a restaurant, looking at a tablet device. The woman on the left is wearing a white shirt with her hair tied back, the young boy in the middle is wearing glasses and a backpack, and the man on the right is bald and wearing a light-colored shirt. The background includes a window with blinds and a colorful wall art piece.
Child with blond hair sitting on a trampoline outside, laughing, with a cloudy sky and trees in the background.
A digital article webpage from Cosmopolitan titled 'This Photo Series of Kids Who Have Diseases Is So Powerful,' showing a young girl with light brown hair and a brown shirt, sitting indoors near a window.
A young girl with curly hair, pink glasses, and pink ribbons in her hair, sitting on a swing with a wooden backrest, outdoors with trees in the background.
Screenshot of the homepage of the LIFE FORCE photo essay magazine website, featuring article titled "An Ordinary Day" by Karen Haberberg, with a photograph of a children's artwork display and text about children with rare genetic conditions.
A young girl with glasses lying on her side, looking at the camera, on the cover of Rare Revolution Magazine.
Webpage profile of photographer and author Karen Haberberg, featuring her photo, name, credentials, a brief bio, and links to related content.
A woman with shoulder-length brown hair wearing a black jacket, sitting outdoors in front of a wooden background.
Website header for Patient Worthy featuring a logo with a droplet and flame, a navigation menu with links like About, Diseases, Share Your Story, Resources, Listen, Languages, and Log In, and a headline about a photographer capturing daily life of rare families with dignity and grace.
Screenshot of an article from Today's Parent titled 'What life is like for kids with rare genetic conditions,' featuring a young boy with blonde hair smiling and jumping on a trampoline in a backyard.
A young girl with long brown hair, wearing a blue shirt, standing in a room with purple curtains, holding a large gymnastics or therapy rope, with a green stuffed animal on a white table nearby.
A group of people, including a woman holding a purple tablet, a child sitting on a pink and blue chair, and another person with a camera, are gathered outside in a backyard with green grass and trees. There is a white picket fence in the background, and some gardening tools and equipment are visible.
A young boy with dark hair and big eyes is sitting outside on a wooden chair, eating a sandwich, and smiling at the camera.
Photograph of three women and a girl with a horse outdoors. One woman appears to be holding or caring for the horse, while the others stand nearby. They are on a sandy or gravel surface, with a wooden fence and trees in the background.