Seeing 'An Ordinary Day' In These Extraordinary Families' Lives Raises Awareness Of Rare Genetic Conditions

"Unless you walk in the shoes of these people who have kids with special needs ... you really have no idea what they're going through."

While genetic conditions themselves may be rare — one in 10 Americans has a rare genetic condition — the experiences of those touched by it are not. Under extraordinary circumstances, their days are still relatively ordinary. 

It is these small, simple moments photographer Karen Haberberg, whose brother died of Tay-Sachs at age three, captures in her visual awareness project, An Ordinary Day — Kids With Rare Conditions. In this series of photographs, she catalogues the daily simplicity and humanity of family life impacted by rare genetic conditions. By providing "a sense of perspective" that usually goes unseen, she hopes to counteract common misconceptions about these conditions. 

"Honestly, unless you walk in the shoes of these people who have kids with special needs or diseases, you really have no idea what they're going through," Haberberg told A Plus. 


"[Some may not] realize that these families also share wonderful moments and appreciate the accomplishments of their kids on such a small, minute level.”

Gianna is the first special needs kid on a "typical" cheering squad in her area.  Karen Haberberg

Through her project, Haberberg aims to give viewers and readers a "realistic picture of what these families and kids experience," so they understand how common genetic disorders actually are. "I want them to feel more comfortable so they don't shy away from these families," she explains. "Because 'different' to people is scary, especially to kids." 

Haberberg makes sure her own young children are aware of other kids with genetic disorders so they can more easily sympathize. "I expect them to step forward, to help them when they need it." 

 Cassie cannot bend down due to a rod in her back. Karen Haberberg

Haberberg knows firsthand how much help a family affected by a rare condition may need.

Though her brother died before she was born, she witnessed the personal toll it took on her parents to lose a child. Now, with An Ordinary Day, she not only feels more connected to her deceased brother, but can better understand the effect on her parents. 

"At the same time that he [Haberberg's brother] inspired the project initially, I've spent much more time now learning about him," she said. "I've gone back through the photos of him ... it just feels much more real now." 

In fact, her first photography shoot for the project was with a family whose child also had Tay-Sachs. The day she spent with them was both emotional and somber. "It just struck me so differently in that my parents had gone through this whole situation ... the way that this family is going through it now, and how unbelievable it is," she said. 

Karen Haberberg's brother, Rafi  Karen Haberberg

Since that first shoot, Haberberg has photographed a total of 27 other families living with a variety of rare genetic conditions. "All of them have stuck with me ... They're all so different, unique, incredible, inspiring," she affirmed. "Now, with Facebook, I literally feel like I have 27 more people to worry about." 

"Darus feels more comfortable in small spaces," said Haberberg.  Karen Haberberg

But she isn't just worrying, she's working.

Hoping to turn her online photography project into a print book, Haberberg has submitted proposals to publishers and is currently waiting on their feedback. In the meantime, she's reaching out to sponsors and planning an auction to raise money to complete the publication of her book.

By raising awareness through her current project and upcoming book, Haberberg hopes to "promote more funding, more energy, more time put into these conditions." She encourages anyone interested in learning more about rare genetic diseases to visit The National Organization of Rare Disorders (NORD) and the National Institutes of Health (NIH). For families who have a child living with a rare genetic condition, Haberberg suggests finding support from others going through similar experiences on The Mighty

Clara was born with rhabdomyomas, or benign heart tumors, as well as tubers growing in her brain. Her genetic condition has caused developmental and language delays, even forcing a removal of the speech center of Clara's brain to minimize seizures.  Karen Haberberg

It's imperative to continue bringing attention to these diseases because, with rare genetic conditions, there is no quick fix.

"It's not like a cancer treatment where you're in remission," she explained. "Their care is really constantly supervised ... None of them have a cure." According to Haberberg, the vast majority of these conditions, 95 percent in fact, don't even have an FDA-approved drug treatment. 

Due to this lack of easily accessible solutions, these families are in and out of hospitals, centers, and research projects, all working toward the same hope that a cure will come in time for their child. While they wait, they cherish every day together, especially the ordinary ones. 


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