“She was born at home but she didn’t open her eyes. She was born with thick heavy eyelids and she looked different to my other children at birth but we didn’t think anything of it until we realised she couldn’t open her eyes properly.” hermother Amina Bibi,50, said.

“When we took her to the hospital she was admitted for six months and they did lots of tests but doctors eventually told us there was nothing they could do. Because the doctors told us there was nothing they could do we never went back to them. And as Khadija got older she refused any help. Doctors told us when she was a baby that if she attempted surgery she could die, so we have lived with that fear. Now that Khadija is much older she has decided herself that she doesn’t want to have surgery. She doesn’t want to risk dying.”