The majority of parents with children suffering from rare fatal genetic diseases looked on aghast at last week’s political events, as a bunch of nasty, and frankly pathetic, politicians sought little more than power and personal advancement. Though some, zealots such as Gove, Farrage and Duncan Smith, actually believe in their infantile vision of an …
This Sunday 26th June is Blue Hair Day, a brilliant annual flagship campaign run by Harrison’s Fund cooked up by a bunch of big-hearted mums to raise awareness and funds for Duchenne muscular dystrophy. The idea to go blue for the day, sport a silly wig and get involved in the Duchenne cause first came …
I write this post over a week after we completed The Big Bad Ride, a 460-mile endurance cycle from Edinburgh to London in aid of Harrison’s Fund, a small charity working hard to find a cure for Duchenne muscular dystrophy, a fatal disease which affects my two young sons, Theo and Oskar. I am indebted …
This week I embark on a bloody long cycle from Edinburgh to London with a number of old school friends. Why we lost touch I do not not know, but that we are in touch again, and will be together as we make our long way down, fills me with joy and wonder. Tragedy has …
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, 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 …
The Guardian, 16 August 2014 – Our beautiful sons could die before us: Nick Taussig thought his son Theo was a bit of a late developer. If only that were true. Doctors diagnosed Duchenne, a devastating genetic disorder – and everything changed. He will not rest until he finds a cure. We judged it to be little …
‘Mother Russia’ had long intrigued the author, but a journey across the country almost changed his mind… The Independent, 3 August 2013 A lifelong student of Russian literature – no one wrestles with the shadow self quite like a Russian novelist – it was perhaps inevitable that I would write a novel profoundly Russian in …
To label the teenager Daniel Bartlam “evil”, as the Daily Mirror does this morning, is a gross oversimplification, not least because implicit in this label is the idea that he is somehow not human, something other, an abomination. He is none of these. Rather he is all too human – an isolated, troubled and destructive …
Jason Russell’s KONY 2012 film is indeed very powerful, playing perfectly to an idealistic youth with its simplistic, gung-ho Hollywood sentiment: that human evil can be eradicated and the world finally made good if only Joseph Kony, the Ugandan warlord, is at last captured and punished. And this youth, by virtue of their youth – …