Why This Mom Is on a Mission to Photograph Children With Rare Genetic Diseases
Karen Haberberg and her family have been living with unspeakable pain since her brother died of Tay-Sachs disease, a rare neurological genetic condition with no known cure, before she was born.
While the agony continues to haunt her family, she's relived the hardship as she watched her best friend struggle to find a diagnosis for her son. She quickly realized that families could use a place to share their stories and hear others. "Finding a proper diagnosis can be incredibly challenging and frustrating for families, and without a correct diagnosis, these children are not properly treated, which stifles their progress," Karen explained to POPSUGAR. "Families often feel incredibly isolated when they find out their child has a rare genetic disease and they want their children to experience life to the fullest every day — even when death may be imminent."
Since then, Karen has combined her personal passion with her skills as a photographer to make this into a reality. With the start of her photo campaign, Project Believe, she is working to raise awareness for rare diseases while also hoping to change the lives of others suffering. According to her Kickstarter page, Karen describes her work as "Life affirming photos of extraordinary children contending with rare genetic conditions and finding joy and beauty in daily life."
For the powerful endeavor, Karen has been taking photos of children with chronic illnesses that also show the endless support of their families with the goal of creating a book of portraits that will serve as an educational resource. "The chronic illness of a child requires a commitment that is with the family every moment of every day," Karen explained. "It steals precious time as families battle insurance companies, search for solace, and struggle to manage everyday tasks."
Yet Karen understands that coping with such an illness can also provide moments of profound dignity, grace, transcendence, and joy, which she hopes to share with others. "This project will provide a record of such moments, illuminating what it means to be a family . . . no matter how brief your time on earth," she shared.
Along with providing 30 families with a place to share their stories in their own voice, the book will also include a brief medical explanation of each disease. "I can't put into words how much I admire these families. I am privileged to know these families and to be allowed into their world for a brief time to photograph their situation," Karen reflected. "The parents are working every minute of every day to do what is best for their child no matter what the diagnosis. The children are resilient, sweet, happy, loving, and fighting their condition with all they have in them."
For more information, check out the emotional video and profound portraits here.