Project Believe: Photographer Aims to Raise Awareness for Rare Illnesses Through Photobook

Through her photos, photographer hopes to shed light on lesser known diseases.

— -- Knowing first-hand the profound effect that death or illness of a child can have on a family, New York photographer Karen Haberberg set out to help.

Before she was born, Haberberg’s parents lost a child to Tay-Sachs, a rare disorder that destroys nerve cells and leads to death at a young age. As a documentary and portrait photographer, Haberberg wondered what she could do to help that community of families, navigating life with chronically or terminally ill children.

She decided to take photos.

About a year ago, Haberberg put the word out on social media and began photographing disease-stricken children and their families in a project she titled “Project Believe.” Her goal is to compile the photographs into a book that will also include information on each illness, most of which are lesser known and generally receive less funding for research.

“This is a lot about making these families feel less isolated and alone, which really does happen to a lot of people when they find out their children is ill,” she told ABC News.

She said she hopes that this book is a way to give those families a voice and a community.

“They are families like anyone else’s,” she said of her subjects. “They have good days and bad days like all of us, and they’re doing their best to celebrate those good days. Their sense of perspective is just remarkable.”

To date, Haberberg has taken photos of about 17 families, and she hopes to reach at least 30.

Though she had been self-funding her project until now, she recently set up a Kickstarter page in order to raise enough money to complete the project. So far, she has raised over $17,000. Her goal is to hit $25,000 by July 24.

The money will go toward travel expenses, as Haberberg has connected with potential subjects throughout the country. Funds raised will also help her put the final product together. She hopes that this book will be a springboard to a documentary film on these families.

“This has been an incredibly life-changing experience for me to be privileged enough to go into these families’ homes and be allowed to witness for a brief time what they’re going through,” Haberberg said. “I have been able to witness how incredibly strong these families are and how incredibly resilient their children are. It’s been eye-opening.”