Karen Haberberg is a local mother-of-two. She’s a successful photographer. And she’s also a dedicated advocate for children with rare diseases and their families.
Before Haberberg was born, her older brother died from Tay Sachs Disease, a rare genetic disorder that destroys nerves in the brain and spinal cord. Like many rare diseases, there is no cure or treatment for Tay Sachs Disease. Her parents were active in raising awareness about Tay Sachs while Haberberg was growing up, and more recently, her best friend’s child was diagnosed with Angelman Syndrome, which is a rare neuro-genetic disorder. “I felt like I was now living firsthand beside her learning about what these families go through,” Haberberg says.
Haberberg has always had an interest in rare genetic diseases, and now she is releasing her first book in October featuring children with rare genetic disorders. An Ordinary Day: Kids With Rare Genetic Conditions tells the stories of 27 families through a series of photo essays. “We all want the best for our children,” Haberberg says. “The sense of resilience these families have is amazing.” Using photographs and interviews, she weaves together a story and takes readers into the ordinary days of these families.
When she first started the book a year and a half ago, she called it “Project Believe” and launched a Kickstarter campaign to help cover her travel expenses. “I named it ‘Project Believe’ because I thought the word ‘believe’ encompasses a lot of the feelings I had toward it,” Haberberg explains. “Believing in the future, believing in these families, believing these kids will live to the fullest they can.” She was able to reach her goal through her Kickstarter video, press coverage, and word of mouth from advocacy organizations and affected families.
According to Global Genes, 10 percent of Americans live with rare genetic disorders and 30 percent of children with rare diseases do not live to the age of 5. “I was just blown away by their perseverance from both the families who are supporting the children and the children themselves,” Haberberg says. “How much time, energy and money they dedicate is just incredible. They’re really doing everything they can to make their world better or as ‘typical as possible.’” Her book celebrates the simple victories in each child’s life, and she highlights these moments to inspire the empathy and sincerity in humanity.
Haberberg’s forthcoming book tells the stories of 27 families and 29 kids along with interviews from their parents. She says it wasn’t difficult to find families to photograph. “People really do want to tell their story and promote the specific disease or condition their child is suffering from,” she says. “People were super open and really allowed me into their lives for a day.” The farthest she traveled to photograph a child was California, but she received a huge amount of feedback from all over the world, even as far as New Zealand.
For Haberberg, the most difficult part of writing the book was choosing which photos to include. She says she could have made this book twice as big. “You can’t always pick the best photos to put in,” she says. “You have to pick photos that work together and tell a story.” Adding to that difficulty were the emotions that came with from the families and their words. Haberberg says she wanted the book to be hopeful, but also honest. “Just like typical families are doing the best for their kids, these families are, too,” she says. “They were so candid and some of what they said was so heartbreaking but poignant and positive.”
Haberberg was unaware of the magnitude the book would have on her and says the book taught her about perspective. “Initially I thought that the book would connect families who have rare conditions with other families, to get the word out, spread awareness, increase visibility and fund for treatments and cures,” she says. “What I didn’t realize was it’s actually a book that any family can connect to.”
Her story becomes a touching lesson that all families have their own struggles. She titled her book An Ordinary Day because the days she spent with the families were ordinary to them. “They take what they’re given, and they do it with such persistence,” she says. Haberberg emphasizes how all parents in the world want the best for their child and how they strive to do the best they can for them. “To these families, the days that I spent with them were ordinary,” she says. “Maybe to some people, they seem extraordinary, but they’re no different than me and you.”
With her first book soon to be released, she still does editorial, fine art, and commercial photography (her business is called Karen Haberberg Photography) but also plans to continue with personal projects. She recorded the interviews on video with the parents in her book and will put some of those on her website. Haberberg even has an idea for a second book: A project that explores the triangle between adopted children and their families, or that explores how adoptees have developed relationships with their birth families. “[I’d like] to photograph birth families and adopted families and interview the adopted child,” she says. Currently, she’s on the search for participants and sponsors for this endeavor. Another project she plans to pursue is creating personal documentaries. She is working with an Emmy-winning team to create a limited number of professional and individually-made films. “Every family has a story to tell,” Haberberg says. “And to preserve it and have it told by the person who experienced it is different than sending down stories.”
An Ordinary Day: Kids With Rare Genetic Conditions will be released in October 2017 by powerhouse Books. To learn more about Karen Haberberg, visit karenhaberberg.com!