Aaaggghhh…. the little girl is always there, fully open to the world, light blue eyes wide with wonder, drifting, floating, with boundless curiosity, as if she’s never grown up. She is afraid, but also full of love, a love she gives, even when she perhaps should not. Five years old and she comforts her distraught …
How I love this young man, perhaps my greatest teacher. He can quash my anger with his smile, melt any resentment, as he holds my gaze. What he gives me when I hold his stare, to let him witness me, not as his father, but as another human being, full of wonder. There’s a great …
I lie on the decking by the pond, a hot English summer’s afternoon. My brow sweats, my mind churns with dread. A persistent feeling the last few hours… lost, sad, broken. Theodor is away, on summer travels and adventures with his mummy. But I think of him, as I often do, my first born. His …
It is as if I, and a few others, inhabit an alternate universe, when the Prime Minister of the United Kingdom, despite being in possession of the most recent reports from the IPCC and United Nations, both of which point to a devastating future should we not immediately curb and cease fossil fuel usage, proclaims …
The most effective and moving film on climate change to date, from someone who has witnessed it firsthand over the past ninety-three years. We are in the midst of the sixth mass extinction, the anthropocene extinction, which we, human beings, are responsible for. Things are dire. I am terrified for future generations. If we carry …
A seemingly magical thing happened in late 2016. I received a phone call, out of the blue, from a dear old friend, Sara Caplan, who said, quite simply, “Nick, I think I can help.” Over two years earlier, in June 2014, my young sons Theo and Oskar had been diagnosed with Duchenne muscular dystrophy, a …
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, …
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 …