Published: 15/07/2016 Tags: Ehlers-Danlos in the News

‘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 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

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