The Huffington Post – The Duchenne Clock

The Huffington Post, 24 June 2015 – I wake suddenly and breathlessly, eyes springing open, heart thudding like a drum, as if I am a soldier on perpetual watch, and my first thoughts are for my sons. Theo fell three times yesterday, I think. His legs simply gave way. He could not keep up with […]

The Huffington Post – What will my sons do now?

The Huffington Post, 20 March 2015 –I last wrote about the diagnosis of my two young sons with Duchenne muscular dystrophy, a fatal genetic muscle wasting disease that will likely kill them before they become men, over six months ago. I was in crisis then, reeling from the shock of the diagnosis, and what this […]