An Ordinary Day - Kids with Rare Genetic Conditions - PhMuseum

An Ordinary Day - Kids with Rare Genetic Conditions

Karen Haberberg

2016 - 2017

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.

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  • 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

  • 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.

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

  • 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.

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

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

  • 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.

  • 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.

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

  • 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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