Ailo Lives

Three year old Ailo is dying. Shortly after birth he was diagnosed with the hereditary disease Canavans, upending his parent's dream of a normal family life. How does his family live with the grief – before the loss has even happened? Ailo's parents Tuva Skjerve and Morten Hegdal took a rare choice – they created another life. I met Ailo and his family regularly for six months, documenting the family's life and everyday struggles. During 2022, Ailo's mother Tuva became pregnant again, introducing a new uncertainty into the family's life: would the new child have the same disease as Ailo? The end result is a photo essay on the unexpected hardships of life – and how families can overcome such hardships together.