
- Karen Haberberg, 43, a photographer from New York, has created a series of portraits of children with rare genetic conditions
- Her brother Rafi, who died when he was three, before she was born, had Tay-Sachs, which destroys nerve cells in the brain and spinal cord
- She is working on a book featuring 25 families which she hopes to use as a ‘springboard’ to connect them
- So far her Kickstarter project has raised $14,464 of her $20,000 target