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Madison in a swing wearing glasses, a little girl with a rare disease

Madison in a swing wearing glasses, a little girl with a rare disease

Karen Haberberg

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Tay-Sachs Disease

8y

How My Brother's Early Death Inspired Me to Capture Families With Rare Conditions

When my mom was pregnant with me, she had the 300th amniocentesis performed in the United States. Amnio is used around the fourth month of pregnancy to detect genetic abnormalities in a developing fetus. My mom had reason to worry. Her first child, Rafi, died before I was born. He had Tay-Sachs disease. He was 3 years [...]

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Tay-Sachs Disease

8y

When I Learned My 8-Month-Old Wouldn't Survive Past 3 Years

Helene’s son, Samuel. We weren’t supposed to have a fourth child. We had agreed to stop after our daughter was born. But I changed my mind and convinced my husband we should have another child and that our family just didn’t feel complete yet. When Samuel was born, he shocked us all at 10 pounds [...]