An Ordinary Day: Kids With Rare Genetic Conditions

A documentary photography project by Karen Haberberg

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)

Addie, Related Intellectual Disability Syndrome (6 Images)

Kelly, PACS1 Syndrome (7 Images)

Wyatt (3 Images)

Clara (6 Images)

Louis, Ehlers-Danlos Syndrome (6 Images)

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

Miriam & Mohammad, NGLY1 (8 images)

Ethan, Angelman Syndrome (7 Images)

Ian, MCAP & PMG (7 Images)

Sean, ALD, X-linked Adrenoleukodystrophy (7 Images)

Quinn, Polymicrogyria (2 Images)

Cassie, Marfan Syndrome (5 Images)

Emily, Sanfilippo Syndrome (7 Images)

Ava, SATB2-Associated Syndrome (4 Images)

Gianna, 22q11.2 Deletion Syndrome (4 Images)

Brian, Ataxia -Telengiectasia (4 Images)

Josie, FoxG1 (4 Images)

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

Jonathan, Mowat-Wilson Syndrome (4 Images)

Nico, Evans Syndrome (2 Images)

Mackenzie, Tay Sachs (4 Images)

Jamesy, Duchene Muscular Dystrophy (4 Images)

Brynn, Rett Syndrome (5 Images)

Daniel, Glass Syndrome (3 Images)

Alexandra & Jonna, Gastroparesis, Crohns & Rheumatoid Arthritis (6 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 ‍