Non-Fiction – Nick Taussig

Aaaggghhh, there you are!

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 mother,

banished to the outside step,

standing behind her,

wrapping her in the warm snug and embrace of a woolen quilt,

and holding her tight.

Her mother, for once, receives this tenderness,

this act of care from her youngest daughter.

For at this moment,

she is cold, desperate and vulnerable,

and needs her daughter’s love.

At the same time, she comforts her irate father,

consumed with an ogre’s anger,

staring at him through the window into the drawing room

and offering him a sweet smile,

as he looks on,

shame-faced and full of regret

for what he’s done.

Her smile,

it is blessed with a child’s innocence and acceptance,

it is full of grace,

and dissipates his rage more than any other remedial stimulus,

even a dry martini.

Her heart beats and flutters, as she feels compelled to run now,

around the perimeter of her family home,

in the depth of winter,

away from this torrent of familial discord,

all this pain and heartache.

She’s unsure where she is going,

but finds comfort and relief in her movement

and the dance of time,

as she skips from one slippery paving stone to the next.

The fear and love are with her as a rebellious teenager,

a young woman in search of adventure,

a committed wife,

a devoted mother.

The unease, the dread, persist, but slowly dwindle,

replaced by a growing resolve to no longer be dominated,

but be free,

no longer living in someone else’s shadow.

Still, she finds herself giving love when perhaps she should not,

but now a middle-aged woman,

there’s a growing conviction in her

to defend herself,

love herself,

be kind to herself,

as she’s been to others her whole life.

For she is more deserving of her own love than anyone else’s.

A greater sense of calm descends on her,

as she finally takes flight.

She can hear the child in her again,

the one who delights in the ease, innocence and simplicity of life.

Life starts to happen to her, as it did when she was a little girl,

and she is carried by its natural flow.

She loves lying in bed at dawn, electric blanket nestling her,

and gazing out of the window,

surrounded by trees,

marveling at the multiplicity of life before her…

squirrels scurrying,

crows cawing,

leaves rustling,

blackbirds warbling,

rain pattering,

pigeons cooing.

The psithurism almost hypnotizes her,

as does the mug of Yorkshire tea she cups in between her hands,

which warms and comforts her

while she floats into milky reflections of her precious children,

Ayesha, Adam and Scheherazade,

who she will love and protect to the very end.

The snap of a ginger biscuit,

and her mind meanders somewhere else,

to all she must do today,

delighting in the list of tasks at hand,

which she will perform with care, attention and gusto.

For is this not all we have?

She gets up and sits at her dresser,

applying verbena cream to her face,

her skin soft like porcelain,

those beautiful hands caressing her cheeks,

as she rubs in the remnants,

the sweet, sharp scent of lemon hanging in the air.

She is happy now,

as she puts on her black jeans and woolen poncho,

and heads for her lair,

a vast attic full of vintage clothes, jewelry and other artifacts.

Adept with her hands,

and in possession of an engineer’s mind

and artist’s heart,

she can create or restore anything.

To the kitchen,

where a chicken carcass has been simmering in a slow cooker overnight,

stewing gently amidst a sea of garlic cloves,

and the smell is as if from heaven… chicken broth.

It is food for her soul,

and she will eat this later,

as often she does not eat until evening.

Afternoon,

and she finds herself lying on the giant, sweeping trunk of her favourite tree,

a cedar,

which she has known and loved most of her life,

that curves and darts upwards like a great bow reaching for the sky.

She does not quite know how she even got here,

as if in a dream,

but feels an immense peace,

behind which there is something else.

She suddenly starts to cry,

her body pushing down on this tree’s great limb,

the thick bark pressing against her skin,

but also holding her, nourishing her,

as she wished her mother had.

But these are not tears of sadness or regret,

but of wonder, of where she now finds herself…

freer, stronger, wiser and happier.

At home, and after she has eaten,

she lies in the darkness, in candlelight,

in a piping hot bath rich in magnesium

and other salts,

losing herself in a mix of different music,

which transports her to another world.

She hears the words of Rumi,

spoken by the many friends who love her,

being whispered in her ear.

And then she chuckles loudly, mischievously,

overcome with impromptu, uncontrollable giggles,

as she recalls an impersonation she performed,

which had her children enthralled.

She cries with delight into her hands,

which she instinctively puts to her face to conceal her joy,

even though there’s no one there to witness this enchanting spectacle.

She is alive, finally, she is free.

The love still persists in her,

the pure love she had in her heart as a child,

but it is unrepentant now, it is defiant,

no longer residing in the dark of fear.

Aaaggghhh, there you are!

My son, Oskar

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 wisdom in his eyes,

like he sees it all,

my struggles,

and the struggles of others.

And in that smile,

there is the most precious gift of all,

for someone as driven,

and at times as troubled as me.

The permission to surrender,

to stop holding and hiding,

and reside with him in the now,

in what is.

For there is little more than this,

in truth,

in that moment of self rupture,

beyond this young man’s gaze,

and his natural, innocent wonder.

How he sees, how he heals.

The joy he finds in seeing,

be this a newly formed sunflower,

raindrops on our pond,

or the silver hairs in my beard,

which he must rhythmically stroke in order to sleep.

Oskar knows, Oskar sees,

and helps me see,

affording me sacred glimpses of presence and attention,

to see things exactly as they are,

beyond the delusion and tyranny of thought,

to feel them,

to their very heart and core.

Oskar, I thank you

Oskar, I love you.

Love Daddy

Theodor, my superhero

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 fierce intelligence, endlessly inquiring mind, and blue grey eyes.

The last of these seem to embody all of him…

his joy, sadness and courage.

He lives with what most of us do not,

what most of us cannot fathom.

Theodor is a brave, beautiful young man.

I find myself gazing up at a clear, bright blue sky,

with no purpose, no intention.

This is the default position of the depressed mind,

but also of the mind that seeks liberation,

from thought, worry and endless rumination going fucking nowhere.

Other than that, the sky has called my attention by virtue of its beauty,

and in spite of my lingering despair,

sometimes my friend but more often than not my enemy,

I cannot but lose myself as I stare into it and beyond it,

floating into its translucent mystery, wondering what is beyond but infinite emptiness,

the nothingness that plagues us all, since it is at the root of all, of everything,

however much we seek to deny this,

however much the depression screams this.

But then, in this fragile, aimless gaze,

I find myself transfixed by the wispy streaks of cloud,

which are interspersed with small cumulus clusters, out of which Theodor suddenly emerges.

He darts through the smallest of the clusters with the precision of his favourite bird,

a Peregrine falcon,

then comes to a dramatic halt.

Transfixed by this spectacle,

of my eldest son floating in the sky, summoning me as if he were Superman,

I am pulled out of the arse of my head – for is not depression akin, in some respects, to shitting on oneself –

and am unsure what to do.

He has powers I can only dream of beyond flight,

of imagination and wonder,

and I realise I must join him up there, though don’t know how…

for he has something to show me.

Theodor has the grace to come and get me,

swooping down as if targeting his prey,

then sweeping me up in his arms, his Lois Lane,

albeit an older, masculine and far less attractive version,

who also happens to be his father.

He takes me straight back to the cloud, from which he first emerged,

then looks into my eyes,

not quite as his,

possessing no yellow though the same hint of blue.

In them I see a defiance,

that he is becoming his own man in spite of all he faces,

that he will do as he wants now,

that there is an unimaginable strength in him,

greater than any superhero,

which will carry him through, but also carry me through,

and as we soar,

this flight in my son’s arms – for he carries me now – ushers an unexpected joy and love into my heart,

with Theodor whispering into my ear with the true wisdom of a Superhero,

“All will be ok, daddy, all will be ok.”

Theodor, my superhero.

Love Daddy

What the fuck are you doing, Rishi?

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 he will grant thousands of new oil and gas licenses.

There is something both tragic and pathetic in his proclamation, as he tries to sell it to the British people. For here’s a man motivated by self-interest – he holds a vain hope of re-election, if he can deliver economic growth – beholden to the increasingly hollow demands of global capitalism, ‘hollow’ because economic growth has shown itself, in late stage capitalism, to be an illusion, a false dawn, unable to even deliver its chief promise of individual happiness.

Beneath Rishi’s poorly delivered sales patter, can be heard the slight existentialist dread of a man who knows, like many other current leaders also lacking the political will and courage to confront the climate crisis, that he’s leading us to oblivion. And yet like his many contemporaries, he is driven by short-term interest, and beyond this, wilful blindness.

It is simply not in Rishi’s interests to do what he, and others, know we must do, which is to radically change the economic system that governs us. And so, he chooses to deny the truth: he is willfully blind. Let us be in no doubt about this. For you can no longer reasonably claim that you have another opinion on the matter, that the climate crisis is, in your view, not as bad as they say, when large parts of the world are either on fire or under water. The evidence is now incontrovertible.

Does he, on occasion, like awake at night, unable to sleep, as he ponders the fate of his young daughters in thirty years’ time, if we continue as we are? He surely must, in spite of his likely inherent capacity to compartmentalise. For there are certain truths that none of us can run from.

Perhaps we must give Rishi some further cause for insomnia, and follow the lead of young Austrians, and others, who are now suing their leaders and governments for climate inaction? This must be the next step for young Britons. To hold him to account for his current actions.

I’m now fully behind the actions of Just Stop Oil, a small group of people with the courage to confront the truth, and do something about it. They deserve all our support.

https://juststopoil.org/

David Attenborough: A Life on Our Planet

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 on as we are, the next century will indeed be the “century of hell” — the scale of human suffering will be immeasurable, like never seen before — and the majority of human life will cease. In the space of three hundred years, we will have made ourselves extinct.

But there is still hope, in David Attenborough’s final testimony, as long as we confront reality, show the necessary collective will, and act accordingly.

We are fucked, but only if we choose to be. In spite of the pull of our selfish gene, which drives us to seek personal gain and satisfaction above all else, whatever the cost — the current White House incumbent the living embodiment of this human failing — we are able to rise above it, to act for future generations, for humanity, for the continuation of our species … if we choose to. And we must, and will.

Enough of Brexit, Trump and other current preoccupations, which in the context of the mass extinction we are living through and will live through, are mere sideshows, spectacles, irrelevances. They mean nothing. They do not matter.

Let us try, try, try, to focus on what matters, and see where this collective will and focus can take us. Might we save future generations? We must, for them. For what else is there… really. There is nothing.

https://www.netflix.com/watch/80216393

Good News Network – The Extraordinary Alchemy of Positive Action

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 progressive and fatal muscle wasting disease, which often kills boys before they become men. I’d responded by fundraising, doing all I could for a Duchenne dedicated medical research charity, Harrison’s Fund, in order to help expedite a significant treatment and/or cure.

Alongside this, my wife Klara and I had realised we’d have to move, our tall thin home in Epsom, the end wing of a Victorian mansion, unsuitable for two boys soon-to-be non-ambulant and in wheelchairs. We needed a bungalow on a flat plot of land, preferably somewhere beautiful, which would nurture the boys’ hearts and souls in spite of their life-limiting condition.

And so it was we found a wonderful place in Box Hill, Surrey, albeit a rather ramshackle two-bedroom bungalow in a state of profound disrepair. We’d need to do substantial work to get the place right, to ensure it met Theo and Oskar’s increasing needs, but crucially it sat on a big half-acre plot with a magical garden, surrounded by trees and woodland, right by Headley Heath – an oasis of open heathland, woodland and chalk downland.

It soon became clear, however, once we’d bought the place, that the extent of work required – to make this a home, which would fully enable Theo and Oskar, and increase their quality of life – demanded more than my salary as an independent film producer could provide. And so it was that positive action, and the hope of a magical outcome, became our modus operandi.

We began with an international architects’ competition run by Colander Associates and supported by Sir John McAslan, to design a light, spacious barrier-free home. Tigg+Coll, a young and exciting practice in London, won, beating twenty-eight submissions from emerging architects in the UK, America and the Netherlands.

And we ended with the slightly mad endeavour that I run twenty half marathons in twenty days from five o’clock to seven o’clock every morning before work. It was this, which led Sara to call me and say, “Nick, short of giving yourself a heart attack, let me see if my current employer, the property developer Ballymore, can help.”

Peter McCall, Ballymore’s Construction Director, and Sara, a senior sales negotiator there, took the special project to the Chairman and board, and said, “Let’s help this family.” Meanwhile, I completed the multi-marathon challenge, running two hours every morning in the black of winter through December, resembling a set of traffic lights – for I was keen not to get run over – and in spite of my physique, which is far better suited to the shot put than long-distance running.

Ballymore offered up its project management and procurement team, which then set about taking Tigg+Coll’s final design and constructing it. And like any charitable and altruistic endeavour, it has been hard fought and challenging every step of the way, with Barry Martin, Dorota Krasnodebska and Vasile Mititiuc – the Ballymore construction and design team – forced to work wonders.

To witness the house coming together has been both life-changing and life-affirming in the truest sense. For this new home, designed and built for Theo and Oskar, will make a deep and lasting impact on the quality of their lives. It will enable them, not disable them further. And all this – so much work and sacrifice, so much goodwill, so many contractors, so much machinery, so many materials – in order to help a family with two disabled children. For me and Klara, Theo and Oskar’s parents, it has been profoundly humbling to be helped in this way and to this extent, as there are so many other families in need also, so many others who deserve such help and support. Our gratitude is boundless, and we shall never forget this great gift.

Thank you… Sara, Peter, Barry, Dorota, Vasile… and so many more, too many to thank in fact, who have done so much and given their all to make Theo and Oskar’s house the very best it can be. We intend for it to be a place where other Duchenne families can visit and stay, so they can also benefit from this great, extraordinary gift … the gift of a new home for Theo and Oskar, which has been purpose built for those living with Duchenne.

The Huffington Post – Love Really Can Conquer All

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, die for them if we must.

Announcements of scientific breakthroughs are made, strong results in laboratories are lauded, positive trial data is circulated. In turn, more money flows into numerous Duchenne-focused bioscience companies, charities and hospitals invest in clinical trial capacity, yet still, things do not progress fast enough. Hopes are built, money raised, science advanced, but then… nothing. Another year passes with no significant treatment or cure, and our sons continue to face the inevitable prospect of a slow, painful and premature death.

Duchenne, in this respect, is a ruthless judge and executioner. Progress means nothing to it, and it teases from our sons’ wasting muscles, murmuring like a deathly ghost casting its fatal spell, “Not good enough. You’re failing them. They continue to die without exception.”

My first Duchenne conference in 2014, and a parent with a teenage son sitting by his side fresh from a tracheotomy, a newly converted responaut, confronted a panel of scientists with the words, “You said the same thing ten years ago, five years ago, and now. But there’s nothing, but for another press release amounting to little. How much money do I need to raise, what do I need to do, for you to finally get there? What do all of us in this room with dying sons need to fucking do!?”

I did not understand his rage then. I do now, as does my wife Klara. This is the spectre that haunts every Duchenne parent, which leaves them so often angry and restless. Can I do more? Can we do more? Can they do more?

The carousel of thoughts and worries always follows a similar course. Theo could not get up off the floor today. It took him twice as long as even just three months ago. He cannot get up that hill anymore. No more walking to school, unless I can park in the school car park, as I can no longer carry them both. What about when Oskar grows weaker too? How on earth do I push two wheelchairs? When will Theo require an electric chair? When will he become wholly dependent on a ventilator to breathe? And on, and on. Worry is repetitive, achieves little, but still, I must engage in it, this purposeless ritual.

And there am I assuming that everything should have a reason or purpose. What is the reason for Duchenne? How can there be one, for a fatal genetic disease that forces boys off their feet and to an early grave.

C.S. Lewis would have me believe, in the infinite wisdom of his Christian evangelism, that my children’s suffering, and the suffering of others with Duchenne, is God’s metaphor to rouse a deaf world. But surely such a god is cruel. Other world religions offer similarly unconvincing rationale, and only Buddhism comes close to offering a credible one, in its idea of deathlessness and perpetual rebirth – the inevitable cycle of life.

Is not Duchenne, in truth, like other fatal illnesses, simply a by-product of evolution, whose imperative demands that only the fittest survive, the species forever regulating its numbers in a multitude of ways in order to continue to exist and thrive. This explanation might seem brutal and fatalistic, but it is nevertheless the truth, in spite of the post-truth world we might live in.

But then, if the laws and logic of our existence are such, this unforgiving and unreasonable, should not our response to Duchenne – to curing our sons of this fatal disease once and for all – be not the same. We must never give up, we must fight to the very end.

Such a response might defy reality – the truth of our existence – but it is driven by love, and in this world of ours, of infinite paradox and ceaseless complexity, little else matters. For love doesn’t require a rationale. And it can conquer all.

The Huffington Post – 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.

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.