Continued from Part I My son was diagnosed with severe X-linked Duchenne type Muscular Dystrophy when he was two and a half years old. By the age of five, he had had two operations for cataract and was diagnosed with oculopharyngeal muscular dystrophy. He stopped walking altogether by the age of …

It was a December morning of 2012. I lay snug inside my hillock of blankets. I hated winters, detested the chills and the piercing stroke of the raw freeze. I would give anything to stay there, cosy, for the rest of the day. There was a click and a strangled …