An estimated 25-30 million people in the United States live with a rare disorder. Almost 12% of everyone in the United States. One photographer is bringing their stories to light.
Karen Haberberg has dedicated the last two years to photographing children with rare genetic disorders. She has published them in a book titled “An Ordinary Day: Kids with Rare Genetic Conditions.”
Rare genetic diseases have impacted Haberberg’s life since before she was born. Her parents had previously lost a child to Tay-Sachs disease. Later in life, her best friend’s son was diagnosed with Angelman syndrome.
According to Haberberg, “Hearing my friend’s struggles and victories made me realize how little attention families who have children with rare genetic conditions receive and how common it actually is.”
Haberberg’s book doesn’t only focus on the children—it also focuses on the family. According to Haberberg, “Each family is unique and special in a variety of ways. I feel so privileged to have had the opportunity to enter their private spaces, get to know each child and learn about their specific battles and triumphs.”
Haberberg has committed to donating all proceeds from her book to Global Genes. Their website claims that the organization “is one of the leading rare disease patient advocacy organizations in the world.”
Haberberg shared, “At times people do want to help, but don’t know how. They shy away from families with kids who have rare genetic conditions when really they should be asking, ‘How can I help?’ or ‘Can you teach me about your child’s condition?’”
Families are so dedicated to their family members. Check out this story of what a mother sacrificed when her kids were in danger. Read it here.