Photographer Captures Daily Life of Rare Families with Dignity and Grace

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Clara, 10, has tuberous sclerosis. Source: karenhaberberg.com

Rare disease began shaping acclaimed photographer, Karen Haberberg‘s family years before she was born. Her parents had given birth to her older brother, who was diagnosed with Tay-Sachs.

Tay-Sachs is a rare genetic disease, in which an enzyme responsible for breaking down fatty substances is missing. The baby appears healthy at birth, but starts showing symptoms at about six months. As the fatty substances build up in the brain, the nerves and spinal cords are damaged. The destruction is progressive, and there is no available cure. To learn more about this rare disease, click here.

Karen never had a chance to meet her brother, but felt the permanent impression left on her family. Since then, she’s seen how her best friend’s family has coped with rare disease, after their son was diagnosed with Angelman syndrome. Angelman syndrome is a neuro-genetic condition that results in developmental challenges. To learn more about Angelman syndrome, click here.

She learned through watching her friend’s family’s triumphs and challenges, that although many families live with the challenge of rare disease, they don’t receive due attention. It’s a duty that’s present every moment of the day. Whether it’s the care and time put into a simple task, or the long phone calls with insurance company, rare disease takes up vast amounts of valuable time.

Karen gained acclaim as a portrait photographer. During her career, she’s appeared in numerous galleries and publications, and collaborated with other prominent artists such as Elliot Erwitt, Annie Leibovitz, and Joyce
Tenneson. Karen has recently focused on using her skills to raise awareness for children with rare diseases. She set out to create a book that shows intimate, human moments in the lives of families whose children suffer from rare diseases. “An Ordinary Day: Kids with Rare Genetic Conditionscame out in mid-October. It spotlights 25 children who struggle with the diseases, as well as the caretakers and families who work tirelessly to support them.

Karen raised funds to travel around the country, visiting the homes of extraordinary families and get to know the children and their care takers individually. She captured moments that were both ordinary and full of patience, humor, frustration, and joy. She shows the accomplishments that another family might not think anything of– a nine-year-old boy who learns to eat with a spoon, a five-year-old girl learning to walk.

One photo shows a child in sunglasses who needs a nap, passed out on his parents lap a the beach. The cover image shows a dining room table surrounded by children’s art. These photos provide an honest portrayal of what it means to be a family living with these challenges every day. Life, for all of us, is not only made up from the most inspirational and tragic points. It’s also of all the small moments in between: riding a swing set, facing off your dad for the last cookie.

Ian has Megalencephaly-capillary malformation syndrome [MCAP], and Polymicrogyria © Karen Haberberg
The book combines photography as well as information and resources about the different diseases. Because the conditions are so rare, often they aren’t understood by others in the community, and receive less support.

Karen stresses the need for the public to be more inclusive. Often the entire family of a child with a rare disease feels ostracized. They may be singled out in public, or not invited to social gatherings. The kids often feel alone as well. Karen hopes that instead of avoiding the families, we can work toward being a society that looks for ways to help and to learn about the struggles our friends and neighbors live with.
Gianna has 22q11.2 deletion syndrome. Even after 26 surgeries, she still loves to cheerlead © Karen Haberberg
Five-year-old Alejandre holds his brother Mohammed, who has been diagnosed with NGLY1 © Karen Haberberg

The proceeds from book sales will be donated to Global Genes, an organization which advocates for rare diseases.

To view Karen’s work or purchase her book, click here.


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