Brave Edendork boy fights against rare muscle disorder

Brave Edendork boy fights against rare muscle disorder

IN Edendork, a young family is fighting a battle few could imagine. Four-year-old Pearse Connolly was born with X-linked myotubular myopathy – an exceptionally rare and life-limiting muscle condition that affects only a handful of children across Ireland. It is a condition that primarily affects muscles used for movement (skeletal muscles) and occurs almost exclusively in males. People with this condition have muscle weakness (myopathy) and decr…