In her new book,
acclaimed NYC photographer An Ordinary Day, Karen Haberberg is spotlighting the little-seen world of families raising medically complex children. Though by definition a rare genetic disease is uncommon, these photos show just how ordinary life can still be in the midst of one.
On their surface, the photographs in
An Ordinary Day look like snapshots from any bustling family household — kids bouncing ecstatically on trampolines, splashing in backyard pools, wading through piles of brightly colored toys. Yet the accompanying descriptions of the children's disorders tell the story of hidden struggles. Emily, age 11, suffers from Sanfilippo syndrome — an illness similar to Alzheimer's that impacts her brain and spinal cord. Addie, 4, is only the 21st person to be diagnosed with related intellectual disability syndrome, which prevents her body from making the protein needed for neurological development.
"Oftentimes, in households with 'typical' kids, we're so absorbed in our daily life — crazy schedules full of tutors and after-school activities — we forget what's really important," Haberberg says. Through her photos, she's able to highlight the heartbreaking significance of other families' seemingly small victories: a hug, a hand held, a simple need communicated.
An Ordinary Day works to de-stigmatize the challenges quietly met by these remarkable families, to help others relate to them, and to build empathy between people on either side of this divide. Ahead, meet the extraordinary children who'll do just that.
Why did you become interested in these children? What inspired you to take on this project? "I had a brother who died of a rare genetic disorder before I was born, so I was always interested in them. And more recently, my best friend had a son with a rare genetic disease, so of course I was even more invested in bringing awareness to what these families go through every day." Pictured: "Ethan has a rare form of a genetic disorder known as Angelman syndrome. Ethan does not sleep very much, has seizures, and can get frustrated when trying to communicate. His hands sometimes flap and he occasionally makes unexplained noises. Regardless of these symptoms, children with Angelman syndrome are known to have a generally happy demeanor. Ethan is no exception: he is constantly laughing, hugging, and smiling. Ethan loves water and playing with his brothers and on his iPad."
What was it like to be an observer of these families' lives? "I'd get a little moment of excitement and nervousness when I was starting each day, just because I didn't always know what I was walking into. But I felt so privileged to be welcomed into each home and to learn about these kids' little worlds. "Above all, I wanted it to be a good experience for everyone — and the last thing I wanted was to add a moment of stress to their homes. Thanks to a lot of planning and communication, I think we built a really honest, open relationship." Pictured: "The first time Cassie's parents heard the words Marfan syndrome, their daughter was about 5 hours old. Marfan syndrome is a genetic disorder that affects the body's connective tissue, causing features such as long limbs, a curved spine, a tall and thin body type, and a dilated aortic root, which can be fatal if not diagnosed in time. Cassie, 9, has had six surgeries, including heart surgery and three spinal surgeries. Due to the metal rods along her spine, which correct her scoliosis, she cannot bend her back. Cassie loves to sing and act, swim, and play Minecraft."
What was the most valuable thing you learned from your experiences meeting and photographing these families? "I learned how incredibly resilient these children can be — and how patient their parents are. I also got a real education in perspective. Oftentimes, in households with 'typical' kids, we're so absorbed in our daily life — crazy schedules full of tutors and after-school activities — we forget what's really important. "Above all, it showed me that we as a society need to do a better job educating ourselves about how to approach and care for these families. People tend to step back out of fear from kids with these diseases, but that just makes them more isolated and alone than they already are. There are so many people who want to help but just don't know how — we're missing out on an opportunity to do good by shying away." Pictured: "Wyatt, 5, is missing a piece of his 22nd chromosome — a mutation that can manifest itself in many ways. Wyatt 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. Wyatt loves the outdoors. He is very tactile and enjoys nature, the pool, and obstacle courses."
What is your hope for this book? "The book had a few goals. One was to connect families with kids to each other. Their lives are so taken over by daily struggles just for the smallest victories, not to mention dealing endlessly with the insurance companies, medications, etc. I wanted to help them build community and know that others were sharing the same challenges. "My other goal was to present the circumstances of their lives very honestly. I never asked the households to set up something special for when I was there. I just wanted to capture them as they were — how they celebrated the small things, and overcame difficulties, in a way that a lot of us don't typically with 'normal' kids. I hope the book catches how it's really a huge thing when a child with one of these diseases eats with a spoon or is able to communicate a need." Pictured: "Ian, 5, required full-time oxygen for the first three years of his life and was later diagnosed with megalencephaly-capillary malformation syndrome [MCAP], and polymicrogyria [PMG]. Symptoms vary from patient to patient but for Ian it includes a large head, body asymmetry, developmental delays, soft skin which gets red or blue from change in temperatures, seizures, and low muscle tone. Ian loves books, sensory items like beans and rocks, Thomas the train, and singing with his mom."
There's so much stigma attached to sick children — it's hard to know how to talk to them or about them, especially with the people who love them the most. Do you have any advice for being there for parents with a sick child? "What upsets these families the most was feeling stared at or judged. So many of them told me that they'd rather just be asked an honest question about their child than be singled out. And if your question comes from authenticity, if you're asking to be helpful, I think that's typically welcomed. But when someone's looking down on them for their child's behavior — behaviors that they can't control — or they feel that they're being shamed for their parenting, it's terrible, and it only contributes to the stigma. "You can imagine all the ways that these parents encounter those judgements every day. People tend to shy away from them, as if their child's sickness is their fault, and they have more than enough to deal with already. It's tragic that our society contributes even more to their isolation. Even if other parents are uncomfortable encountering a sick child, it's so important to teach our kids to be more accepting and kind." Pictured: "Though Nico, 4, often appears to be in perfect health, he is one of less than 1,000 children around the world suffering from Evans syndrome. Idiopathic thrombocytopenic purpura, and neutropenia, an autoimmune disorder. Sickness as mild as a common cold frequently escalates, requiring Nico to be hospitalized. Because his immune system is so weak, Nico is not able to be in many public places, including school. Evans syndrome is not heavily researched and the cause is still unknown. Nico loves toys, arts and crafts, baking, the outdoors, and dreams of owning a zoo one day. His latest interest has been science, as he wants to make medicine for sick people."
Do you hope the book will help change our perspectives on sick children? If so, how? "I hope An Ordinary Day raises awareness for these families and helps them feel less isolated. When parents with children struggling with these diseases connect to one another, it's very comforting. Just to know that someone else is going through the same stuff, it makes a huge difference. "Equally important, it's critical that those of us with 'typical' families and kids learn to be more empathetic and understanding when we encounter someone dealing with these diseases. I hope the book de-stigmatizes their experiences and sheds some much-needed light on their courageous stories." Pictured: "Miriam and Mohammed are the first Black children diagnosed with NGLY1, and Mohammed is the youngest ever. There are 30 known cases in the world. Symptoms include developmental delays, liver dysfunction, smaller head, diminished reflexes, seizures, and lack of tears — among others. The diagnoses for both of Amientabah's children came in the same phone call, just days after Mohammed's birth."