'It is an incredibly lonely place': Woman whose brother died at age three from a rare genetic disease captures tender images of other kids struggling with chronic illness

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 before she was born, had rare genetic condition. He had Tay-Sachs, which destroys the nerve cells in the brain and spinal cord. She is working on a book feature the stories of 25 families, four of whom are pictured, which she hopes to use as a 'springboard' to connect them.