It was World Duchenne Day on 7 September. Much happens in the community, as parents around the world continue to strive for a significant treatment or cure for their sons: there is nothing quite like the motivation of a parent watching their child grow weaker by the day. We will do anything for our children, …
I am not as I was. I am a changed man. Life has changed me. Duchenne has changed me. I, we, will beat the fucker, that is the fatal disease, Duchenne muscular dystrophy, which Theo, Oskar and thousands of other boys worldwide have, and which will kill them. The diagnosis gives us parents, of Duchenne boys, …
I did not think it would be this soon, just after his fifth birthday, that his legs would finally fail him. Bocketts Farm in Fetcham, Surrey, Saturday morning, and Theo stumbles over to me from the softplay on his toes, legs quivering below the knees. “I cannot walk, daddy! My legs hurt.” With these words, …
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 …
“A dazzling study of mental anguish and moral dilemma” Author Nick Taussig picks his essential crime fiction reads… The Big Issue, 7 August 2013 1. Crime and Punishment, Fyodor Dostoyevsky Following the nihilistic student Raskolnikov, this is a dazzling study of mental anguish and moral dilemma. 2. The Godfather, Mario Puzo We’ve all seen …