© Anahita Avalos

14. Embraced Difference

"I had taken hundreds of pictures of my son Ulysses, but in every one I hid something about him. I couldn’t stand to document the thing on his belly that showed he was not “normal”. Because of Costello syndrome, a very rare genetic disorder, he didn't eat and needed this gastrostomy button to survive. I hadn’t planned to take this photo and it surprised me. It didn’t hurt like I had thought it would – I saw just my son as he was: a beautiful, funny, little man very interested in life around him, just like any other child his age. Different and normal at the same time. Costello Syndrome is a rare multiple congenital disorder in which individuals have characteristic craniofacial features, failure to thrive, ectodermal and musculoskeletal anomalies, cardiac abnormalities, endocrinopathy, developmental delay and a predisposition to tumors. There are about 500 cases in the world.

— Anahita Avalos

Family Photography Now, directive and week 14: Embrace difference

"Alice is my daughter and I started to photograph her when she was a year old. Alice was born with Down's Syndrome, but is no different to any other little girl or indeed human being. She feels what we all feel. She needs what you and I need. Photographing her in the context of our family – the joys and the tensions, ups and downs that go with the territory of being in any family – has been, and still is, an extraordinary experience, and one I feel deeply passionate about. It’s a way of reflecting society's relationship with 'difference' of all kind.

— Sian Davey, photographer