How Duchenne Has Changed Me

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, a frightening clarity and purpose. Our sons grow weaker by the day, will suffer and die young, and so we will do whatever it takes, to keep them alive for as long as possible. What meaning this suddenly gives our lives, what purpose?! We will do anything for them, fight to the very end, even give our lives for them, such is the pull of this new raison d’etre, such is the power of our love. But this purpose and love can also twist us, unsettle us, destroy us.

A friend, a very dear and candid one, made me face this paradox head on. “You will do whatever it takes for Theo and Oskar, but at what cost, what expense, to others?” It is a question which every one of us, who is doing all we can for our fatally ill children, must ask ourselves. Does our determined and single-minded pursuit,  to make their short and difficult lives as fulfilling as possible while simultaneously seeking a significant treatment and/or cure for their condition, risk leaving little room for anything, or anyone, else? The answer is, of course, yes.

Klara watches me, embarking on this challenge then that one, knowing this is my way of confronting the deadly disease, and supports me on each occasion, though like my dear and candid friend, does not let me forget that I walk a tightrope, giving so much time and energy to the fight that there is then, paradoxically, not enough of me for those I fight and strive for. How she loves Theo and Oskar, an ever-present and devoted mother, with her boys every step of the way, till the vey end. Is not this the greatest challenge of all – greater than running 400km over twenty days, or cycling 600km over three?

What to do? How to find the balance? How should we, parents of sick children, respond to their condition? What lengths should we go to? I had not imagined that these were the big questions I would be asking myself at 43.

I had read Viktor Frankl’s Holocaust account as a young man and disputed his search for meaning. According to Frankl, “Freedom is only part of the story and half of the truth. Freedom is but the negative aspect of the whole phenomenon whose positive aspect is responsibleness. In fact, freedom is in danger of degenerating into mere arbitrariness unless it is lived in terms of responsibleness.”

I saw this as life-inhibiting, not life-affirming, as I firmly ascribed to the idea that what really mattered was what we expected from life. I was the self-centred, individualistic libertarian, committed to Nietzsche’s narrative of the force and power of the individual’s will, sure that the meaning of life lay in a commitment to personal liberty, personal enhancement, above all else. I was as naive, outspoken and sure of myself, as the likes of Milo Yiannopoulos.

But it is easy to be a cultural libertarian and free speech fundamentalist when one has led a privileged life and not been challenged by it. It takes little courage and strength to be outrageous and outspoken. Vanity is the principal requirement, which the likes of Milo and Trump possess in abundance.

Frankl, when faced with the horror of Auschwitz, realised that “what was really needed was a fundamental change in our attitude toward life. We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead think of ourselves as those who were being questioned by life—daily and hourly. Our question must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.”

And so now, as a middle-aged man, with two fatally ill sons, I find myself agreeing with Frankl’s assessment, not least because I’ve had enough of talk, the mindless and petty chatter of modern life that Milo, Trump, Boris, Farrage, the Daily Mail and others epitomise, all these narcissistic fools, albeit one an inanimate one, who busy themselves with their own incessant self-aggrandisement and petty preoccupations, who revel in power and notoriety, at the expense of others. I wish they would expend their energy trying to find the right answers to life’s problems, which are far greater than the ones they’re concerned with.

What if Farrage, instead of pursuing his misguided and adolescent obsession with independence from Europe, had spent the last decade fighting, and finding the cure for, a fatal disease that is killing hundreds of thousands? What if Boris, rather than doing anything to become PM, even if this meant lying to himself and others, had committed himself to tireless environmental campaigning in the face of the dire forecast that the majority of the southern hemisphere could well be uninhabitable in twenty years? What if Milo suddenly gave up on his shtick for wealth and infamy, his narcissistic and frankly tedious “Dangerous Faggot Tour”, and instead dedicated himself to taking on the countless governments worldwide who are marginalising, criminalising and in some cases killing their homosexual citizens? What if Trump, rather than seeking the highest office in the world, instead committed himself solely to philanthropic work, doing as Bill Gates does and giving away his fortune.

How I wish all these power-hungry, influential fools would redirect their efforts towards what matters, this not the advice of a bleeding heart liberal, but of someone who sees clearly that there are far greater problems facing us that require our right action and right conduct. It takes far greater courage to be truly responsible, for ourselves and others. How I’d love to help these men redirect their efforts. What good they could do, what responsibleness they’d show, this the greatest human quality of all.

Let’s fight for what’s truly right and important in 2017, and see what we might achieve.

The Huffington Post – I Cannot Walk, Daddy!

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, he wraps his arms around my waist and holds on tight, through fear of collapsing in a sprawled heap on the floor.

I bend forward over his body, and reach for his calves, both of which feel more like small boulders than failing leg muscles. He relies on these like no other – as every Duchenne boy does – while he can still walk to keep him upright and moving forward. He’s having contractures, his calve muscles shortening and cramping. I squeeze one of them, and feel him flinch with pain.

‘I cannot bear this’ is my immediate response as I lean back until I’m upright again, then look at him, my son, my dear son. “Daddy, I need to sit down,” he says with extraordinary composure and pragmatism. I look around and cannot see a free chair anywhere. Now Oskar, his little brother, is here too, clinging to my leg and wants carrying as well. He might have Duchenne also, but unlike his older brother, he’s definitely able to walk, simply doesn’t want to.

Shit, what do I do? “I need a wee, daddy,” Theo then utters. I carry them both, in either arm, to the toilet. Unable to stand, I hold Theo over the urinal while Oskar, out of my arms now, runs around inspecting every other vacant urinal.

“A chair, daddy, a chair,” Theo declares, as I carry him out of the toilet and sit him down on the nearest one, then hurry back to get Oskar, who by this point has turned on every tap he can reach and is spraying and splashing water everywhere.

Back to Theo, with Oskar screaming under my arm – he did not appreciate his water show being interrupted – and Theo says, “A wheelchair, daddy, so we can look around,” as if stating the obvious.

I burst into tears at this point, as a number of parents look on, unclear as to why this man before them with two adorable little boys is quite so upset. Oskar no longer cries, and Theo looks at me a little perplexed.

“Yes, a wheelchair,” I mumble to myself, as I realise I’ve left Theo’s at home and don’t have a buggy either. Reception, yes, they might have one, I think, and hurry over to ask them. Bingo, they do, and Theo is suddenly delighted as daddy returns with a big red-framed one.

He’s adamant that we look at the miniature farm exhibit, each window displaying a different season, then go and feed the animals: the goats, lamas, sheep and cows. Theo is smitten by an exceptionally greedy Billy goat, who proceeds to eat not only all the feed but the brown paper bag containing it, while Oskar is transfixed by a small Jersey cow, whose enormous wet tongue slathers his hands and arms until they are thick with saliva.

“Wash hands, boys,” I insist, “then to the swimming pool”. Will he be able to swim? I wonder. “Daddy, yes, swimming will help my legs,” Theo says, as if possessing an innate understanding of his condition. “Yes, let’s help those poorly muscles of yours,” I reply, and he smiles warmly at me, excited to see Jo, his swimming instructor.

In the car and off we go, and before long we’re there, at the pool, and Jo is waiting. She gets him moving in the water in no time, and soon he is walking again, the water seeming to seep into his legs and give them life once more.

I sit with my wife Klara, who consoles me, both of us watching Theo and Oskar through the glass, as I recount the events of the morning. And when I’ve finished, Klara, urging me to look at Theo laughing and smiling with Jo and his little brother in the water, whispers in my ear, “It is what it is, Nick, he is good within himself, and that is all that matters.”

Klara is right, this is really all that matters, and yet I must still do what I can for him, I think, keep him on his feet for as long as possible before the disease takes its deadly grip.

Next week is The Big Bad Ride. Riding out with me are Nick Rucker, Dave Morrison, Joe Quigley, Chin Nicholson and Rob Dembrey, all the way from Land’s End to London, just under 600km in four days. Thank you, gentlemen, for doing this. Please sponsor us here.

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The Huffington Post – We Will Never Forget, Brexiteers!

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 independent Britain outside of Europe running its own affairs like never before, others, like Johnson, do not. He saw the zealots for what they are – little men, ignorant of history, clinging to a fantastical view of what Great Britain might be – yet hoped they would nevertheless provide him with a path to power and glory. He, Boris, would take the throne, reign in the fanatics who got him there, then give the people a more palatable Brexit light.

I am angry, very angry, and write this after listening to a Roald Dahl interview on BBC Radio Four, the writer insisting that sometimes we must cry out, speak the truth and confront the bullshit we are spun. In the spirit of Roald Dahl, a heavyweight boxing champion before he became a writer, I would love to get Gove, Farrage, Johnson and Duncan Smith in the ring, and systematically beat the lies they spun throughout the campaign out of them.

I’m unclear whom I’m more angry with: Gove for his Machiavellian cunning, Farrage for his populist idiocy, Johnson for his rampant blonde but dumb ambition, or Duncan Smith for his bare-faced cheek, claiming to care for the vulnerable while simultaneously subjecting them to abject penury for six years.

But what I’m most angry about is the consequences of their actions, which will never lead to something more important than saving the lives of sick children. In one foul swoop, the Brexiteers have jeopardised the future of rare disease medical research – reducing its funding, destroying the spirit of collaboration between many European countries, and delaying vital work that will save young lives. Instead they have consigned a nation’s energy, for decades to come, to “being in charge of its own affairs again”, whatever the hell this means, as if it were not before. Brussels never ruled us, you bloody fools, it enabled us.

Murdoch and Dacre, and many of their fanatical and small-minded columnists, bang the drum for an independent Britain because it plays to their ill-informed readers, helping them sell more newspapers and feeding them the lie of a perfect Britain, a great utopia that will somehow manifest in our separation from Europe. Grow up, wise up. We must make our own happiness, which can never be found in constructs such as nationhood, the promise of every totalitarian regime. We would do far better to spend our time on things that matter: friends, family, people. Human beings make the world great, not nations.

Gove, Farage, Johnson, Duncan Smith, Murdoch, Dacre and other Brexiteers… I will not forget the consequences of your actions, my sons will not forget, other sick children will not forget, and their parents will not forget. I hope you realise in time what you have done.

The Huffington Post – Blue Hair Day

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 from a group of mums at my eldest Theo’s school, who, when he and his brother Oskar were first diagnosed, wanted to do something to help. These mums saw very clearly that something had to be done to stop another generation of boys dying from this fatal genetic disease. And so they came together and did something about it.

I find myself often sounding like a broken record, and worrying that those close will simply tire of me when I say over and over that if we do not do what we can as soon as possible then another generation will die. This is not a politician’s mantra about whether we remain in or leave Europe, a slogan about open or closed borders, a catchphrase about whether the United Kingdom should devolve or stay together. It is far more important than all of these: it is about doing all we can to stop another generation of boys from dying, because if we do not, their lives will be very difficult, this is certain, and they will die.

Theo turns five in just over a month and his wheelchair is on the way. The disease takes its grip already, distorting his body and unsettling his mind: the brain also needs dystrophin, the vital muscle protein he cannot produce. Over the next few years he will become more reliant on his chair, and by adolescence will need an electric one. His body will then fail him further, his spine curving, and his heart and lungs growing steadily weaker. By his late teens he could well be locked in, able to speak and operate his chair, but unable to breathe without a ventilator and do anything without a carer, even scratch his nose. What life is this? Need his life be this?

Theo and other Duchenne boys possess an innate and intimate understanding of their condition. They know they are different, that they grow weaker not stronger, that their futures hold something very different. But they carry on, rising to the great challenge of their disease, not wilting in the face of it, and finding another way to be and to experience life, which is as rich, complex and meaningful as any other life. But how I, and many other Duchenne parents, want our sons to be able to live another life, if they so choose. Their incurable disease robs them of this choice.

There is nothing more important for Duchenne sufferers and parents than to have others beside them, acknowledging their pain and predicament, and working with them, alongside them, hand-in-hand, to change their fates. My wife Klara wept the other day because she felt no one really heard her cries, and the cries of other Duchenne mothers. We all need to know we matter; we all need to know others care. Though science moves ahead, with great promise being shown in a wide range of treatment approaches, there is still much to do, and unless we are together, another generation of boys will die: I say it again, this mantra, but only because it is the truth… and must be said again and again until it is heard by all and a significant treatment or cure is finally found and made available to all.

There might be more happening than ever before in the Duchenne world, and yet unless we are together, supported by as many people and organisations as possible, we will not beat this cruel disease. Blue Hair Day asks all of us to come together for the day as one and show a collective will, humour, spirit and courage to finally beat this big bad disease, which is robbing thousands of boys of a future. Let us face it, let us beat it, let us all get involved: https://harrisonsfund.com/blue-hair-day.php

The Huffington Post – Friends Like These

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 to my fellow riders: Nick Rucker, Mike Barnard, Dan Croft, Luke Bordewich, Dave Morrison and Chin Nicholson. All of them kept me going in very different ways, from Nick’s infectious energy and wonderful madcap silliness, to Mike’s quiet strength and resilience, to Dan’s steadfast determination and humour, to Luke’s willingness to lead the charge from the front, to Dave’s infinite wisdom and experience in all matters cycling, to Chin’s ever-present and indispensable care and support.

Old friends and new, they trucked along with me as we followed the A1 all the way down: getting lost, windswept and drenched in Northumberland; battling delirium and unimaginable fatigue as we climbed yet another bloody Pennine; racing across the flat lands of Lincolnshire, high on Haribos and energy gels, sure that we were finally pro-cyclists; and pushing through, on the last day, from Cambridge to London, our final destination Dulwich College, where half of us had gone to school. It was there where we ultimately collapsed, after we had crossed the line, in one giant saddle-sore heap.

Beyond the training we’d all done, what really kept us going, however, was the love and affection we have for one another, and our shared purpose, which at times I could see etched very clearly on my friends’ pained faces: Nick determined to keep on going in spite of his failing knees, Mike in spite of his sciatica, Dan in spite of the growing number of pustules accumulating on his arse, Dave in spite of his exhaustion after riding the first two days in one, Luke in spite of the demands of his new job and the fact that he has done one-too-many long charity rides already, and Chin in spite of not knowing any of us before this whole insane endeavour began. All of them did it in spite of the pain and discomfort they had to endure along the way, because of Theo and Oskar, and other boys with Duchenne, this cruel disease.

Humour, more than anything else, sustained us, and there was plenty of it, which Mike captured so well in a post-ride email. Moments of understatement included me announcing on the first day in Edinburgh, five minutes into the ride, “Don’t worry, the Garmin (a favoured GPS navigation device for cyclists) will show us the way!” It transpired that I couldn’t actually work the thing, this becoming all too clear when, just ten minutes later, we found ourselves on the motorway, definitely not on the designated route, dodging high speed juggernauts. Moments of genius included Chin making each of us a perfect espresso in Consett, from the support car, to accompany our Lidl lunch.

Lowlights included cyclocross care of Google Maps in Bishop Auckland, where we ended up on a road not even fit for livestock let alone MAMILs in lycra with their precious bikes petrified of getting punctures. Highlights included Nick’s guide to the different dialects of Scotland and Northern England, normally at high volume and in local company to test authenticity of accent.

Moments of stupidity, as Mike rightly observed, included preparation for a long day’s cycling with curry tapas and four pints of Kingfisher each the night before. It’s no wonder Dan ended up standing in a public park in Holbeach with his hands down his shorts smothering Sudocrem all over his arse while two young girls looked on, considering whether or not to inform the nearest policeman and have him arrested.

As the days went on, Nick and I, the two Nicks, regressed, remembering every single slightly mad gesture, sound and phrase we’d cooked up at school, with the rest of the team forced to endure this dual insanity, which expressed itself even when we were halfway up a hill, and in considerable pain. It’s lucky that the sanity of the majority prevailed, this spirit of reason captured best by Chin – in every respect a dead ringer for the wonderful Jim Broadbent but for the fact that he’s a redhead and at least a quarter of a century younger.

We received a special welcome at the finish line, our loved ones there to greet us along with supporters from the College including the Master Joe Spence, and when I knelt down to hug Theo, while Klara and Oskar looked on, I could sense his gratitude and appreciation, as he looked at all of us exhausted and started to piece together quite why we’d done what we just did, cycle the length of the land, to help his “weak muscles”, in Theo’s words.

We got there, we made it – God knows how – and I am indebted to all of you: Nick, Mike, Dan, Luke, Dave and Chin. Thank you, Gentlemen. You are good men. And perhaps, we shall do it again next year.

There’s still time to donate here: TheBigBadRide. Please do.

The Huffington Post – The Big Bad Ride

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 curious habit of bringing those we’ve lost contact with back into our lives. When I found out last year about my sons’ fatal diagnosis, I was reeling, my mind frantically trying to make sense of what had happened, why such a fate had befallen me, my wife, my sons.

I scoured my past, recalling as much as I could, some memories imbued with great significance, others, with little; some interpretations with hope, others, despair. The narrative in my mind was like a broken record, repetitive and tuneless, consumed by a false logic. Yes, this has happened because of this. It must have done. There is no other explanation. And on, and on.

I had learned long ago, though, not to place too much stake in past reflection, particularly during times of crisis. The mind is its own worst enemy and does not offer meaning and solace, but nihilism and chaos. Three years of psychoanalysis had taught me this, the unquiet mind possessing a striking propensity for melodrama and catastrophe. Was it not inevitable that it would lead to this, that I must face what I do now?!

Such fateful thinking is unhelpful, not least because it’s clear that, if we try hard enough, we can explain anything to ourselves. I would not find an answer in my past for why my two sons’ muscles are wasting. No, rather, they were simply born this way, without proper functioning dystrophin genes. That’s it. No more than this. And why? Because nature’s like this, all of us different, none of us perfect, some of us with overt weakness, such as Duchenne, and others with a more subtle form, barely visible but still present.

The word ‘disability’ has infinite meaning, something we become acutely aware of when we are the parents of disabled children. We realise that disability is manifest not only in the body but also the heart. Someone might be tall, strong and handsome, a seemingly perfect able-bodied specimen, but they are emotionally disabled i.e. an arsehole.

Amidst the disorder and heartache of those first few months of diagnosis, trying to come to terms with my son’s deteriorating bodies, there were moments of striking clarity, my mind drawn to those that matter, in particular to lost friends, my dreams full of school days.

There was Nick Rucker, whom I’d been so close to. We spent most of our teens striving to be as madcap as possible, spurred on by the likes of Monthy Python, inventing an infinite number of silly voices and even sillier, and frankly absurd, faces. When we were not fooling around, we prided ourselves on being great artists one day, and sportsmen the next, though we were neither. It was Nick who suggested we do something for Theo and Oskar, and preferably something as foolish as trying to ride the length of Britain, or close to it. Neither of us even owned a bloody bike.

Before I knew it, Nick had also pulled in others to join us, old school friends such as Dan Croft, whose mischievous sense of humour, inventiveness and goodwill I remember so well. Dan had the wonderful capacity to disrupt anything. And Mike Barnard, a rarity in a head boy, sharp-witted and fiercely intelligent but also profoundly decent and humble, a combination that invariably won us over.

As ill-qualified as the two Nicks to undertake such a long ride – neither Dan nor Mike owned bikes either – the perfect team was, therefore, assembling. And Nick Lawson, the year above us, would be joining too, possessing a great empathy and fierce determination to help the vulnerable and marginalised, born out of the tragedy of losing his own son when he was very young.

Two experienced riders accompany us, thankfully, Luke Bordewich and Dave Morrison, both of whom we novices would be lost without. And then there’s Chin Nicholson providing team support, and Mark Dressel, who’s worked hard to get me ready the last few months with intensive watt bike training. “I will help you to understand your engine,” he explained to me during the first session, as I looked at him rather confused, unaware I even had such a thing.

Old friends and new have come together for The Big Bad Ride, and I realise how fortunate and privileged I am to have friends like these, who, in spite of the demands of their own work and families, quite simply, want to help, and more than this, are willing to suffer along the way. Riding 460 miles or 740km is not easy. It hurts. But they want to do this, will put their bodies and minds through this.

It was Nick who said to me not long ago, “Hey, there’s not enough love in the world.” This statement captures well what is, in truth, most important, the capacity to actively love, to have a big heart, to not be an arsehole. If I were to find any great wisdom or truth in my past, it would be this, that real love is not something which comes easy to us but rather something we must dedicate ourselves to, work at, persist in, fight for.

Before I learned that my sons might not reach adulthood, I loved them, but differently from how I do now. My love was, in many respects, a passive one. The love I have for them now, though, is more conscious, determined, deliberate. I want them to be happy, to possess a real joy and love of life, and to this end will stop at nothing to ensure neither is excluded in spite of their illness, that they can have all the things that their contemporaries have, in particular good friends.

Theo, just four years old, already cherishes Max, Ben and Lewis. He missed them terribly during the summer holidays and longed to be with them again. On his birthday, finally reunited with them, he was unable to contain his joy and excitement, wrapping his arms around each of them and holding on for dear life through fear that they might leave him once more.

Now at school, these friends become evermore important as his body starts to fail him, and I hope, for his sake, they will love him as actively as my school friends love me, doing what they can for me and my sons.

Do please sponsor us on The Big Bad Ride

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 Max, his best friend, who grows stronger and faster by the day, where Theo becomes weaker and slower. The disease takes its sinister hold.

How long do we have before he can no longer walk? I wonder. Time takes its course, and will not stop for him. Tick tock. Tick tock. The Duchenne clock. How I hate this ever present sound in my ear. How I wish time would stop. Klara wished for this yesterday, while lying in bed with Theo and Oskar, that time stand still for our precious boys. We do not want to witness their inevitable decline. But it will not.

Enough of this, I say, and rally myself for the day. But on my feet and in the shower, water running down my face, it is not long before my mind returns to Theo and the events of yesterday. He stood there, I remember, as he so often does, with a quiet dignity, watching Max run away from him and into the arms of another child. He knew his legs would not carry him, and so he watched them, Max and the other child, with an awkward mix of curiosity, joy and sadness. He was happy his best friend was happy, but also sad he could not keep up with him, which meant he was now alone. Theo then turned and looked at me with those blue grey eyes, which possess a striking glint of yellow, the very same as Klara’s, his mother’s – these eyes I can lose myself in – and asked, “Is Max still my friend?”

This question hurt, and I felt my throat contract and stomach tense. It hurt because it captured what his condition, Duchenne muscular dystrophy, is doing to him, slowly robbing him of his mobility, independence, freedom. Tick, tock. Tick tock. That awful clock again.

Not quite four, Theo is unaware of the severity of his condition. He senses it, that something is not quite right, that he and his brother Oskar are somehow different, but no more than this. He does not know the extent of his decline, the stages he will go through, which every Duchenne parent dreads, the legs going first, then the arms, until he can no longer even put his arms around me, and finally the heart… beating its last premature breath.

I walk back into the bedroom and sit on the end of the bed. Theo is still asleep. I love looking at him as he sleeps. He seems to embody such perfect peace. I lean over and stroke his skin with the tips of my fingers, then kiss his forehead a number of times and hold my head next to his. Then I lie down next to him and simply stare. I could lie beside him like this for hours, if I had the time. Tick tock. I am entirely his, I realise, will do whatever he asks of me. I will fight for him to the very end.

Klara and I inhabit a new reality now, almost a year on from Theo and Oskar’s diagnosis. We accept he cannot run; cannot walk upstairs unassisted, and can only go down them on his bottom; cannot walk for long before his legs hurt and he must stop. But in all these actions that his peers do without a second thought, which they, and we, all take for granted, Theo persists, always smiling. Caroline, the pre-school manager, refers to his resilience, this quality he needs to resist the disease, to ensure it is life-affirming not life-limiting. How he will need to fight to nurture this quality as he grows and the disease limits him more, I think, as I lift myself from the bed and make my way to the front door.

I do not want Theo and Oskar to die before me. No, I want them to live far beyond me, to experience all of life, its many facets and stages. What sustains us, Klara and I, is trying to realise this, to do all we can to ensure they, and other Duchenne boys, lead long and full lives, not restricted by their condition but rather empowered by it, enabling them to nurture their spirits and fully embrace life in all its joy, pain and wonder.

But we cannot do this without the care and support of others, I realise, closing the door behind me and stepping out into the street. There are so many who have helped, who give us the will and belief to carry on. Our families, our friends, but also fellow parents of Theo and Oskar’s peers, who are working so hard to help us and them. There is something wonderful in what they’ve come up with – Maria, Hannah, Rachel and others – a day of blue wigs and fun, Blue Hair Day, a day dedicated to Theo, Oskar and all the other boys afflicted by this cruel disease. It encourages us to laugh in the face of Duchenne, to face it with joy not despair, and herein lies the victory – the disease will not beat us, the clock will not govern my every waking hour, my sons and others will be afforded the time they deserve.

Please support Blue Hair Day

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 meant for me, Klara, and most importantly, Theo and Oskar.

The prevailing emotion was fear, my mind and heart plagued by an endless carousel of worry and dread. How quickly will they decline? When will they be in wheelchairs? How will Klara cope? How will I cope? Might a significant treatment or cure come? How should we bring them up now? What should our hopes and aspirations be for them, in light of their terminal condition?

Then came the realisation that many of these questions were the unanswerable cries of a desperate parent whose children were not going to be what he had expected, indeed, what he had wished them to be. Parents have the unfortunate disposition either to mould children in their own image, or to force them to be what they are not and never will be. What did I want Theo and Oskar to be? One a great rugby player, the other a great writer?

Such wishes, however, have been rendered meaningless by their Duchenne – the single defective gene they carry, which now seeks to define their whole being. To be a great rugby player requires significant physical prowess and strength, which my sons will never possess, as they cannot produce the one protein vital for all muscles – dystrophin. Without this, muscles can do little more than waste away. And to be a great writer requires time, many decades in fact, which my sons do not have either. Duchenne is ruthless in its course, giving its sufferers little more than a glimmer of adulthood before it takes the most precious organs of all – the heart and lungs.

But then, perhaps Theo and Oskar, irrespective of their illness, will aspire to be neither rugby players nor writers. In Theo, I see a charming, imaginative, thoughtful, resilient little boy who cares little for rugby. And in Oskar, though he is still so very young, I do not see a mind which aspires for literary greatness, but rather one which is ever present and playful, both of which will preclude him from being a literary great, which requires introspection and melancholy.

Much of my suffering, and the suffering of all parents with Duchenne children, in the early years of the disease at least, is attributable to the above – the shattering of expectations. And yet they are just this, merely hopes and wishes, and as I slowly let go of them, my suffering diminishes. Why hanker after what is no longer possible, indeed, what my sons might never have wanted any way.

Theo and Oskar’s disease will shape who they are, but need it limit them, their experience of life. We live in a society dominated by insatiable aspiration and achievement, and push our children to live by these cultural standards without question. Unless they become successful lawyers, doctors, accountants or engineers, they have somehow failed, not made the most of life. But are not such aspirations, in truth, life-limiting rather than life-enhancing. Success, as our culture sees it, gives us wealth and power. But what else does it give us? Very little, in fact.

The parent of a disabled child, you are suddenly forced to look with a hard and discerning eye at the society your children live in. Will it nurture them, in spite of their condition, or will it neglect them? How will they live in a society that requires them to compete first and foremost, to be faster, stronger, wealthier, more powerful than the next man?

What drives me now, more than anything, is to nurture my sons’ spirits, to give them the strength to challenge, and perhaps even change, the culture they live in – in whatever small way. Their spirits will prove far more important than what they might earn and own, what they might do for a living.

It requires considerable strength to live another way, to live a life that your parents might not want, indeed that society might not want. Klara and I will do all we can to ensure Theo and Oskar go their own way, find their own meaning in life. We will do this for them, and for other disabled children.

If you would like to help fund the world’s best researchers and scientists find a cure, please donate to Harrison’s Fund: harrisonsfund.com

Nick Taussig is cycling The Big Bad Ride between 24-27 September 2015 for Harrison’s Fund. If you would like to make a donation, visit justgiving.com/TheBigBadRide

huffingtonpost.co.uk/nick-taussig

The Guardian – Our beautiful sons could die before us

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 more than a routine appointment with the pediatrician, and so only I had gone, not my wife Klara. Both of us did not need to be there. Would she not confirm what we suspected? That our soon-to-be three-year-old son, Theo, was just like me, no more than a late starter. My mother had reassured me – as only mothers can – that I had been the very same. I did not crawl, just walked, and this I did about a year too late. And my speech, well, that was late also. I had said nothing until I was two and a half.

Theo was his father’s son, therefore, developing in his own inimitable way, and the pre-school manager was simply being neurotic and overzealous in her concern for Theo’s development – his failure to hit certain key milestones. His nursery was not worried in the slightest. An occupational therapist, a physiotherapist and a speech therapist had assessed him, and they had raised no major concerns. And so was this not just final confirmation that Theo was fine, albeit a little slow in getting his act together?

The pediatrician took to him immediately, Theo charming her with his big blue eyes and shy smile, behind which lurks a great confidence, as if he already knows he’s in possession of good looks, which will serve him well as a teenager and young man. She took out some toys. He did as he always did and flopped clumsily on the floor, almost in the manner of a rag doll, legs splayed either side, and began to play. She asked me about him, the usual questions. When did he sit up on his own, crawl, walk, talk, blah-blah-blah? I answered as best I could, unsure of exact dates, though my answers were not important because, well, he was his father’s son.

He sat for quite a while and played. “I think he’s an intellectual,” the pediatrician said warmly, then asked him to get up, and he did as he always did and heaved himself to his feet, using his hands to help him stand, looking as if he was climbing up his legs. She then said she wanted to see him walk, and we left her consulting room. Theo, excited by the change of scene, did as he always did and waddled fast down the corridor, his idiosyncratic gait – hips swinging camply from side-to-side – a perfect metaphor for his development: he did things his way. And lastly, she wanted to see him walk up some stairs, which he likewise struggled with, taking one tentative step at a time whilst clutching at the wall in the absence of a rail, until after a few steps he gave up, crawled up a few more, then insisted that daddy carry him the rest of the way.

We returned to her consulting room, where she explained she would like to take a blood test, which I judged to be no more than precautionary. We arranged it for the next morning. And that was that.

She called the following afternoon, the results already through, asking to see us tomorrow, and this time could we both attend please, mum and dad. “Is there something wrong, do you think?” Klara asked. “No, not all. I think she’s just being very efficient,” I replied.

We walked into the hospital again on the morning of Thursday 26 June. This is just six weeks ago, I realise as I write this, and yet it feels like an eternity. Why does time have the habit of slowing down quite so much when we are in pain? I still cannot remember exactly what she, the pediatrician, said, though she spoke with great tenderness, her voice quivering, on the verge of tears. “He has very high levels of creatine kinase…this points to muscular dystrophy…and by virtue of his age and sex, it’s statistically most likely he has Duchenne.” I could not bear to hear this last word, which possessed an appalling finality, but even worse, I could not bear to see my precious wife floundering with the diagnosis, because she did not yet know what I knew, what this word meant.

I knew because a year before I had approached Alex Smith of Harrison’s Fund further to reading a newspaper article entitled, “I Wish My Son Had Cancer,” Alex alluding to the fact that cancer research is far better funded and resourced than muscular dystrophy. I was interested in making a documentary film about his extraordinary attempt to complete an Ironman Triathlon – a 3.8km swim, a 180km bike ride and a 42.2km marathon – carrying his 35kg disabled son, Harrison, the whole way. To this end, I’d even written a pitch for broadcast, describing how Alex had first learned of his son’s fate, the doctor explaining that, “Harrison cannot produce dystrophin, a protein we all need to build up and protect our muscles. As a result, every muscle in his body is deteriorating. He will most likely be in a wheelchair by twelve, will suffer from respiratory failure, heart failure and other debilitating orthopaedic complications, and will die in his late teens or early twenties.” Was there any hope? Alex had asked. “No, the disease is 100% fatal,” the doctor had replied. This was now my son’s fate as well.

I began to cry, then found I could not stop. I was barely able to speak. The appointment ended with the recommendation that Oskar, our eight-month-old son, be tested also. Klara thanked the pediatrician, and the four of us left. I held Oskar, while Theo took mummy’s hand. We walked aimlessly through the maze of corridors, until Klara eventually suggested we go to the canteen and eat something: the boys needed their lunch.

I ordered some food, for Klara and I too, though well aware that neither of us would eat. How could we? Klara uttered the word, at which point I told her what I knew of Duchenne. She started to weep, in this dour canteen, as a group of student doctors looked over at us, likely wondering what diagnosis we had just received. Theo responded by smiling at his mother in between a large mouthful of mozzarella and tomato panini, as if reassuring her that, in spite of the fatal genetic illness he had just been diagnosed with that would kill him before he was a man, all would be okay. And I could not bear this smile, because at that moment all could never be okay, as our son, our beautiful son, was going to die before us.

We have to call family and friends, Klara and I realised when we got home, and this was exhausting, as they all responded so differently, some crying while others held it together, doing their best to be strong and supportive. We got to the point where we were tired of having the same conversation over and over. “What’s the treatment?” There is no treatment. “But what about steroids?” They do little more than postpone the inevitable by a few years. “Might there be a scientific breakthrough?” Possibly, though we cannot count on this. “How are you?” We’re ok, when what we really wanted to say was we’re drowning. “You’re so brave.” Thank you, when what we really wanted to say was what fucking choice do we have, should we just give up now?!

The next few days and weeks, Klara and I entered our own private hell, the shock of the news quickly replaced by a desperate grief – it was as if our son had already died – and in my case, a malignant sadness, which gnawed at my heart like a cancer. I was unable to sleep, to think, and struggled to even look at Theo, as whenever I did, all I saw was his cruel and painful decline, his muscles wasting away before my eyes. He would never play rugby, never make love, never make it to university, never realise his full potential. One morning, after just a few hours sleep, I went for a run. I pushed myself until I could not take another stride, then sat down on a bench and wept, praying that Theo live a full life and I die.

Oskar was diagnosed with Duchenne as well. Klara was distraught when I called from work and told her. Her parting words to me were, “We must be incompatible.” I did not tell her that she is the carrier of the defective gene, X-linked inheritance a defining characteristic of Duchenne. I hurried home as fast as I could, desperately worried for her. I felt like I inhabited a nightmare as I stood there, on a packed platform, listening to the loud and continuous laughter of a group of businessmen beside me. Lost in a haze of grief, I got on the wrong train. When I did finally get home, I found Klara with my parents. She looked fragile, unlike her, as she is always so very strong. “It’s me, isn’t it, I’ve given it to them…” she uttered, and all I could do was hold her and kiss her and tell her I loved her.

The following week, the love and support of family, friends and colleagues proved vital, sustaining Klara and I when all felt lost. We found ourselves fluctuating wildly between hope and despair, one minute sure that a cure would be found in time, further to reading yet another article online, the next convinced that one would not, with us doing little more than deluding ourselves. It took my sister to remind me that, “Right now, the boys are very happy, and will continue to be, as long as you give them all your love and care.” And she was right.

I will cherish them to the very end, but also will not rest until a treatment and/or cure is found, of which there is the real prospect of one now. There are 2,500 British children with Duchenne and 300,000 worldwide. Ninety nine per cent of sufferers are male. It is a cruel and horrible disease, and the most common fatal genetic disorder to affect children around the world.

Last weekend, we were in a children’s playground. Klara was helping Theo navigate a few of the different climbing frames. A father behind them escorted his two daughters, Theo’s age or thereabouts, and became increasingly impatient. Why is this boy so slow? Why is his mother so protective of him? he wondered, then huffed and sighed. I wanted to rip his head off. How dare he dismiss my son in this way! Does he not realise that this woman, my beautiful wife, is not cosseting her child, but rather aiding him, because his hips and shoulders are too weak? My son has a disease, is disabled, and this prick doesn’t realise it. Well, I will make him realise, I thought, as I prepared to confront him. I looked at Theo again and he was smiling, enjoying the challenge of the last obstacle, and I looked at Klara, who was so present with him and always has been. Christ Nick! I rebuked myself, and walked away.

In that moment, I understood that I have cherished and loved Theo and Oskar more this past month than ever before. Their diagnosis, in this respect, has been a perverse blessing, forcing me out of my stupor and delusion, and urging me to really be with them as opposed to being too often preoccupied with work and worry. Klara knew from the moment they were born that we were blessed and privileged to have them, and has never lost sight of this. But I did lose sight, on occasion. I took them, my beautiful boys, for granted.

A wonderful man, a friend of my sister’s, said to me a few weeks ago, “Certain children choose their parents, and Theo and Oskar have chosen you and Klara, as you possess the qualities and strength they need.” Before I was told my sons were dying, I would have dismissed these words as no more than sentimental claptrap, but now, I hold them close to my heart.

If you would like to help fund the world’s best researchers and scientists find a cure, please donate to Harrison’s Fund: harrisonsfund.com

Nick Taussig is running a marathon on 21 September for Harrison’s Fund. If you would like to make a donation, visit justgiving.com/NTaussig

theguardian.com/lifeandstyle/2014/aug/16/our-beautiful-sons-could-die-before-us

 

The Big Issue – Nick Taussig, Five Crime Novels Everyone Should Read Before They Die

“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 the trilogy of films but read the original novel, stunning in its detail of the inner workings of the Cosa Nostra.
3. Papillon, Henri Charrière
First published as a memoir – the tale of a French criminal escaping from countless penal colonies – it later transpired the author was prone to fantasy and that the book was a novel after all. But what a creation.
4. The Spy Who Came In From The Cold, John le Carré
The master espionage writer’s third novel was brilliant, not least because you feel the writer in every sinew of his hero, Leamas.
5. The Big Sleep, Raymond Chandler
Revel in the plot’s complexity and how Chandler leads you one way then the other. Yes, the double-cross extends to the reader also.
Nick Taussig’s latest novel, The Distinguished Assassin, is out now in hardback (Dissident, £12.99)