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ORPHA Z YME ANNUAL REPORT 2020 Advancing treatment in neurodegenerative rare diseases Lleyton Coombes Lleyton is 14 years old and suffers from Niemann - Pick disease Type C ( NPC ) . Here he is pictured on set of award - win ning Niemann - Pick UK ( NPUK ) short film " Go Make Memories " ( 2019 ) . Lleyton was the only live - action actor featured in the production , with his story directly in spiring the film along with many other members of the NPUK Community . © Copyright 2020 NPUK , this picture is kindly lent to Orphazyme A / S by NPUK