I had the pleasure of interviewing Karen Haberberg, acclaimed New York photographer about her recent photo book ‘An Ordinary Day: Kids with Rare Genetic Conditions” which gives an intimate glimpse into the lives of children living with rare diseases, and their families. Proceeds from book sales will benefit genetic research, which we know all too well, is greatly needed.
This book features two children who are members of our global connective tissue disorder family. Louis, who lives with Ehlers-Danlos Syndrome and Cassie who lives with Marfan Syndrome, two of the many hypermobility related disorders that we support here at Hypermobility Connect.
My interview with Karen:
As I read through your book and was drawn into your photographs, tears streamed down my face. As a trained Occupational Therapist I have worked with children with some of the conditions you have captured, and I have one of them myself. Stories like these are not unfamiliar to me, yet your work really tugged at my heartstrings.
I’m sure this work was often overwhelmingly emotional. How did you look after yourself while completing this project?
The work was a labour of love and both emotionally heartbreaking and incredibly rewarding. I feel connected to all the families in the book and my heart goes out to them. There was never a question for me of whether I could emotionally deal with the subject matter. My concern was how to best tell each families story authentically.
Every time I met a family, I was reminded how unique this project was and how incredibly important it is for raising awareness for a community of people often overlooked, and at times treated like outcasts. There were definitely more than a handful of moments when parents were talking to me candidly that I choked back some tears.
Watching these kids and families repeatedly work as hard as they do to learn basic skills and move forward, which could be as simple as eating, was heartbreaking at times. These families persevere because they have to, but they do it with such profound grace that it’s astonishing; I deeply respect them.
What are the top 3 lessons you learned from this experience?
Did you gain any wisdom from the parents of these children which you would like to share with our readers, many of whom are parents of children like Louis and Cassie with Ehlers-Danlos Syndrome and Marfan Syndrome, respectively?
Each family gave me a gift. Bearing witness and listening to their struggles and triumphs was life-changing. Despite their challenges, each family handled their situation with such grace and love.
Nothing and no one is “perfect” and that is more than okay.
Celebrate the little things and don’t sweat the small stuff.
These kids and parents are remarkable and they reminded me every day to be grateful.
What impact do you hope your book will have on the world?
I hope the book connects families with kids who have rare genetic conditions to similar families and society at large. Often times, families with kids who have rare genetic conditions feel isolated and alone. They feel people don’t understand; they are often not invited to parties for fear their child will behave inappropriately (i.e yell out with loud noises) and spoil the event.
We need to educate kids and adults on how to treat families with children who struggle with any kind of atypical ailment or condition. Most of the families I spoke with have experienced being singled out, stared at and judged, whether it be at the movies, at restaurants, or even a religious institution. Steph wasn’t permitted to bring her son to synagogue services because they were worried he would disrupt the service and this is a religious institution!
At times people do want to help but don’t know how. They shy away from families with kids who have rare genetic conditions when really they should be asking “how can I help?”, or “can you teach me about your child’s condition?”
We have been given the opportunity to give away one copy of this beautiful, heartfelt book. So here we go…
Entries close 11.59pm AEDT January 25th, 2018.
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