What it’s Like Living With Ablepharon-Macrostomia Syndrome

Ablepharon-macrostomia syndrome (AMS) is one of the rarest genetic disorders on Earth. It’s characterised by various physical deformities, including the underdevelopment or absence of eyelids and an abnormally wide mouth—and while development of motor skills remains largely unaffected, children affected by the disorder often suffer from stunted intellectual growth and speech impediments.

Alexey Shaev, or “Lesha” for short, lives with AMS in Russia. Lesha was abandoned as a child and placed into the care of an orphanage, then adopted a few years later. After his foster parents helped fund several corrective operations, Lesha started attending a special primary school where he took up swimming and dancing.

Russian photojournalist