An Ordinary Day - Kids with Rare Genetic Conditions

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 children living 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.

© Karen Haberberg - DARUS FEELS MORE COMFORTABLE IN SMALL SPACES.
i

DARUS FEELS MORE COMFORTABLE IN SMALL SPACES.

© Karen Haberberg - Image from the An Ordinary Day - Kids with Rare Genetic Conditions photography project
i

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

© Karen Haberberg - Image from the An Ordinary Day - Kids with Rare Genetic Conditions photography project
i

WYATT, 5, is nonverbal, cannot eat by mouth, and is blind in one eye. Two of his fingers are fused together on one hand. He has already had eight surgeries, including one open-heart surgery.

© Karen Haberberg - CASSIE’S MARFAN SYNDROME COULD HAVE BEEN FATAL IF DOCTORS HAD NOT CAUGHT IT IN TIME.
i

CASSIE’S MARFAN SYNDROME COULD HAVE BEEN FATAL IF DOCTORS HAD NOT CAUGHT IT IN TIME.

© Karen Haberberg - Image from the An Ordinary Day - Kids with Rare Genetic Conditions photography project
i

KIDS WITH RARE CONDITIONS OFTEN REQUIRE THE ASSISTANCE OF YOUNG SIBLINGS. ALEJANDRE, AGE 5, HOLDS HIS BABY BROTHER, MOHAMMED. MOHAMMED AND HIS SISTER MIRIAM, (WHO IS WATCHING TELEVISION) ARE THE FIRST AFRICAN AMERICANS DIAGNOSED WITH NGLY1.

© Karen Haberberg - BECAUSE SHAAN CANNOT WALK OR SPEAK MUCH, HIS PARENTS STRUGGLE TO FIND ACTIVITIES HE CAN PARTICIPATE IN.
i

BECAUSE SHAAN CANNOT WALK OR SPEAK MUCH, HIS PARENTS STRUGGLE TO FIND ACTIVITIES HE CAN PARTICIPATE IN.

© Karen Haberberg - ETHAN WILL NEED LIFELONG CARE AS A RESULT OF HIS CONDITION.
i

ETHAN WILL NEED LIFELONG CARE AS A RESULT OF HIS CONDITION.

© Karen Haberberg - Image from the An Ordinary Day - Kids with Rare Genetic Conditions photography project
i

WYATT is missing a piece of his 22nd chromosome—a mutation that can manifest itself in many ways. Wyatt loves the outdoors. He is very tactile and enjoys nature, the pool, and obstacle courses.

© Karen Haberberg - DESPITE THE METAL RODS ALONG CASSIE’S SPINE, SHE IS A GREAT SWIMMER.
i

DESPITE THE METAL RODS ALONG CASSIE’S SPINE, SHE IS A GREAT SWIMMER.

© Karen Haberberg - THOUGH HE IS CAPABLE OF EATING SOFT FOODS, JONATHAN GENERALLY DOES NOT LIKE TO EAT AND IS NOT ABLE TO SELF-FEED.
i

THOUGH HE IS CAPABLE OF EATING SOFT FOODS, JONATHAN GENERALLY DOES NOT LIKE TO EAT AND IS NOT ABLE TO SELF-FEED.

© Karen Haberberg - Image from the An Ordinary Day - Kids with Rare Genetic Conditions photography project
i

LOUIS SUFFERS FROM EHLERS-DANLOS SYNDROME AND POTS. HIS MOM WORRIES ABOUT HIM DISLOCATING BONES OR PASSING OUT FROM HIS HEART RATE SUDDENLY DROPPING.

© Karen Haberberg - ADDIE IS NON-VERBAL YET SHE IS A DAREDEVIL WHO LOVES TO CLIMB AND BOUNCE.
i

ADDIE IS NON-VERBAL YET SHE IS A DAREDEVIL WHO LOVES TO CLIMB AND BOUNCE.

© Karen Haberberg - JAMESY OFTEN SLEEPS IN A HYPERBARIC CHAMBER TO HELP IMPROVE HIS BREATHING, AND HIS DAD ALWAYS JOINS HIM.
i

JAMESY OFTEN SLEEPS IN A HYPERBARIC CHAMBER TO HELP IMPROVE HIS BREATHING, AND HIS DAD ALWAYS JOINS HIM.

© Karen Haberberg - Image from the An Ordinary Day - Kids with Rare Genetic Conditions photography project
i

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

© Karen Haberberg - THOUGH GIANNA HAS HAD 26 SURGERIES, SHE IS STILL ABLE TO PARTICIPATE IN HER TOWN’S GENERAL CHEERING SQUAD.
i

THOUGH GIANNA HAS HAD 26 SURGERIES, SHE IS STILL ABLE TO PARTICIPATE IN HER TOWN’S GENERAL CHEERING SQUAD.

Latest Projects

Sign up to our weekly newsletter

Stay in the loop


We will send you weekly news on contemporary photography. You can change your mind at any time. We will treat your data with respect. For more information please visit our privacy policy. By ticking here, you agree that we may process your information in accordance with them. This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.