The age of the red pen

IN THE summer of 2005 Karen Aiach and her husband received heartbreaking news about their four-month-old daughter, Ornella: she had a rare disorder known as Sanfilippo syndrome. The prognosis was that, from about the age of three, the disorder would gradually rob her of most of her cognitive abilities. She would probably develop a severe sleep disorder and become hyperactive and aggressive. She was unlikely to live into her teens; she certainly would not survive them.