The Faces of Rare Disease

Karen Haberberg was so determined to tell the story of children with rare genetic diseases that she brought her camera into some of their homes to capture their everyday lives. Her young subjects are afflicted with conditions such as Tay-Sachs disease, Marfan Syndrome and Polymicrogyria, which although they sound uncommon, affect one in 10 Americans altogether.

Her photo book, “An Ordinary Day: Kids With Rare Genetic Conditions,” which benefits genetic research, will be released on October 17th. It takes us into 27 homes and through poignant photos with accompanying narrative text, illustrates not only the plight of the children, whose symptoms often include the inability to walk, talk or eat, but the struggles of their parents and siblings. Through their sick children, however, the families learn to appreciate each day and never take anything for granted, including simple accomplishments like getting their child on a school bus or into a McDonald’s.

Haberberg, who lives in Chelsea, said she now has 27 more families in her life through this project. She would like to make a documentary to shed light on the topic. In addition, she has been approached by other organizations, such as Epilepsy Awareness Day, to create similar books for them.

You were inspired by your parents’ loss of your brother from Tay-Sachs disease. But how did the idea for the book actually come about?More recently, my best friend had a child diagnosed with Angelman Syndrome, which is also a rare disease. And I just wanted to do something to give back to that community because I really felt like they were kind of ignored in the media. And these families felt really isolated and not really welcomed in places. I was hearing these stories from my best friend. Ethan, her son, can’t go to services at his temple because the temple is afraid that he’s going to be too disruptive at the kids’ service. So I contacted the National Tay-Sachs & Allied Disease Association because we’ve been affiliated with them for years because of my parents. And I offered to volunteer, but realized that wasn’t really where I was going to get what I needed out into the world, so came up with this idea. And they sent an email around to some families who have kids with Tay-Sachs and one of them agreed to do the shoot and that’s where it started.

How did you find the other children featured in the book?I contacted a few organizations. One of them that was very helpful was Global Genes, where they just sent out a blog post on it. But what ended up happening was I really got a lot from word of mouth. A lot of the families basically socialize with other families who have kids with similar issues, but maybe not the same genetic condition.

You launched a Kickstarter campaign to raise funds. What was your experience like with that?After I shot Mackenzie, who has Tay-Sachs, I realized, “This is what I want to do and I need to somehow get it done one way or another.” So I started a Kickstarter, and I was very apprehensive about asking the community for money, but really did feel like it was a good cause. Also I had decided that the profits were going to go to rare genetic disease research, so it became a little easier to ask for help. And then I just stressed out for the month while the Kickstarter was running and, fortunately, made my goal, and used that money to travel to families and get the book designed.

You tell the stories of the parents as well. As caregivers, what did they all have in common?Some of them were challenged getting the diagnosis. Some of them got an incorrect diagnosis initially. Basically, the doctors really don’t know that much. So I think the struggle to get the diagnosis was very similar across the families. I think [of] their frustration in not having any kind of real cure for them. The devastation of once you get the diagnosis, of what your child’s future is going to hold. And then feeling, oftentimes, [of being] socially excluded and judged.

You also write about the siblings. What did you take away from them and their interactions? The siblings are incredibly sensitive to their siblings and kind, loving and warm. For the most part, I really did not get the impression that they’re jealous that their sibling gets more attention, which often happens just because they’re much needier. What I found is that the siblings are very accepting and have become more sensitive and empathetic individuals.

Tell us about one of the families you worked with.All of the families are so unique that it’s difficult to choose one to talk about. Mackenzie was probably one of the most difficult shoots I have ever done. Since I had a brother who died of Tay-Sachs disease, in the back of my mind, I was thinking about my parents and what they must have gone through. It was my first shoot and I was just blown away by the care, calmness and patience her parents demonstrated. Mackenzie requires full-time care with feeding tubes, physical therapy and respiratory care. It was an eye-opening day. I learned how incredibly resilient we can be, children especially. I also witnessed what real patience looks like and the experience gave me a greater sense of perspective and real priorities. These themes were carried out though all the families I photographed.

What has the feedback been like so far?The feedback has been genuinely positive. I’ve been approached by other organizations to do books like this for them. I think the people who have seen it think it’s unique. The design came out lovely. The photos are sensitive and authentic.

I read an interview you did where you said you now have 27 new families to worry about. So you’re still in touch with all of them?Yeah, in one way or another. Through Facebook or email. I’m having an opening on October 25th [in New York] and the ones who are local are coming. I’m having six families there.

The proceeds from this book benefit Global Genes. Explain what the organization does.It’s one of the biggest organizations dedicated to rare genetic diseases. So I wanted to pick an organization to donate to that represented not just one specific condition, but all of them.

Did you always know you wanted to be a professional photographer?I loved photography and got a camera when I was 13 for my bat mitzvah. But I wasn’t that brave as I was growing up to become a photographer because it’s a difficult profession, so I used to work in kids’ television and media. And one day, I just decided I was going to follow my dream and try and be a photographer. So I went to art school and here I am.

www.karenhaberberg.com