Edward Alfred Cockayne (1880-1956), after whom this disease is named, was a London physician who concentrated particularly on hereditary diseases of children. Cockayne syndrome is a rare inherited disorder in which people are sensitive to sunlight, have short stature, and have the appearance of premature aging. The symbol for Cockayne Syndrome (CS) is a butterfly – this is because Edward Cockayne was fascinated by the beauty of butterflies.

Amy and Friends like to think that as this disease progresses within our children that they eventually outgrow their CS body and emerge with bright, shiny wings to soar above the clouds.