The parents of these brothers fight to make every day of their lives happier than the last... and the reason will break your heart

Theodor Taussig wants to paint, to plant his handprint on an empty canvas then smear the colours together until every inch of white is obliterated.  

This is the way with three-year-olds: art tends to involve free self-expression and a great deal of mess.

Theo’s mum, Klara, indulges him. ‘It’s no problem. I’ve got Wet Wipes,’ she says, ‘And clothes can be washed.’

Meanwhile, her younger son, 11-month-old Oskar — smiley, placid and cuddly — is diverted by a helium balloon in the shape of a cat. 

He watches it sail above him and chuckles. 

Three months ago, Klara resolved to make each day of her sons’ lives happier than the last. It is an elevated ambition, but one she intends to honour.

‘Every day I think: “Today is going to be the best day of our lives. Right here and now”,’ she says. 

‘I’ve stopped rushing around as I used to do, creating hundreds of unnecessary tasks for myself. 

'I don’t take my sons for granted. I’ve re-evaluated my priorities. I’m pausing to savour every moment, to realise my boys are happy and in that we’re very lucky.’

Many mothers in Klara’s position would not be so positive. Many, in fact, would be consumed by the scale of her misfortunes.

In June, both her sons were diagnosed with Duchenne Muscular Dystrophy, a devastating genetic disorder of which she was the unknowing carrier.

Her boys cannot produce dystrophin, a protein we all need to build up and protect our muscles. As a result, every muscle in their small bodies is deteriorating inexorably.

There is no cure and scant reason for hope or optimism. 

Theodor and Oskar will most likely be in wheelchairs by the age of 12. They will suffer from respiratory and heart failure as well as other debilitating orthopaedic complications.

They are likely to die before they reach the end of their 20s; long before their parents, Klara, 37, an artist and former model, and her husband Nick, 41, a film producer.

When Theodor’s condition was first diagnosed, Nick knew precisely what the implications were.

A year before, his eye had been caught by a newspaper story, headlined ‘I Wish My Son Had Cancer’.

The boys cannot produce dystrophin, a protein needed to build up and protect muscles. As a result, every muscle in their small bodies is deteriorating inexorably

It was an interview with Alex Smith, whose son, Harrison, had just been diagnosed with Duchenne.

 Alex was alluding to the fact that cancer research is far better resourced and funded than that for muscular dystrophy.

Harrison’s father had asked the doctor for a prognosis. ‘It’s 100 per cent fatal,’ the paediatrician had told him. 

And now Nick knew this was his sons’ fate, too.

But Klara did not know what Duchenne was. She only knew, as she sat in the paediatrician’s consulting room, on the day Theodor was diagnosed, that her husband was crying as if he would never stop.

‘I didn’t know how severe it was,’ she recalls. ‘I didn’t understand the implications. I felt as if I was in a heavy fog and I couldn’t see or think. 

'I just knew it must be terrible news because Nick was crying hysterically, and the doctor was crying, too.

‘Afterwards, we walked aimlessly down hospital corridors, then into the cafeteria, and Nick told me about the disease and that Theodor would not live beyond his 20s. I burst into tears.

‘At that point, Theodor just looked me in the eye — the boys had been with us throughout — and the most beautiful smile spread across his face. It was as if he was saying: “Don’t worry, Mum. That’s life.” And then I smiled, too, through my tears.’

Within days, a blood test revealed that Oskar, too, had Duchenne. 

There are 2,500 British children with it and 300,000 worldwide. Ninety nine per cent of sufferers are male. 

It is a cruel and terrible disease, and the most common fatal genetic disorder to affect children around the world.

Klara, it emerged, carried the faulty gene and both her sons had inherited it. It had been a 50/50 chance. Neither had escaped.

How does a mother contend with such guilt and sadness?

‘To begin with I was distraught. I thought: “I’ve given it to them; it’s because of me.” Then I had to learn not to blame myself,’ she says.

‘I had to think: “They’re part of me — both the good and bad”, and resolve to give them the best life I could.’ 

When Theodor was born in August 2011, Klara and Nick were full of the joy and trepidation that comes with becoming first-time parents

Although there have been days — indeed there still are — when the ambition of that undertaking almost overwhelms her.

The insidious thing about Duchenne is the subtle way, to begin with at least, it disguises itself. 

You might have thought — as indeed Klara and Nick did at first — that Theodor was just a slow developer.

He cannot run. Instead he merely walks fast, with a rolling, hip-swaying, gait. He cannot climb stairs. He never will. Otherwise there are scant signs of his disability.

He is a sweet-faced little charmer: ‘Cheeky, sociable, creative — and stubborn,’ says his mum.

When Theodor was born in August 2011, Klara and Nick were full of the joy and trepidation that comes with becoming first-time parents.

‘We tiptoed around him: he was our firstborn,’ says Klara. ‘And, like all new parents, we thought he was just perfect.

‘We expected him to reach his milestones on cue. But he didn’t. While other babies were crawling, then toddling, Theodor was just lying.

‘He was late to walk — 16 months — and when he did his co-ordination was poor. I’ve always said he’d trip over thin air. And when he fell, he didn’t instinctively put his hands out to save himself. He’d just fall flat then lie there as though he was stranded, unable to pull himself up.

‘His speech was slow, too. I discussed his development with Nick, with my mum, with Nick’s mum. We all concluded that he was a slow starter. “We’re all different,” we said, and tried not to worry.’

It was Theodor’s pre-school teacher who first expressed concerns about his progress. 

Klara and Nick were indignant. They thought she was being neurotic; over-zealous. He’d catch up in time, they were certain.

Even so, Nick took his elder son to see a paediatrician. ‘I didn’t go,’ recalls Klara. ‘I was trying to believe everything was fine. I took Oskar to his playgroup instead and resolved not to worry.’

But it soon became clear that something was catastrophically wrong. A blood test was taken. The next day, Klara took a phone call: the result was back — the swiftness of it was unnerving in itself — and both she and Nick were told to attend the hospital the following day.

It was June 26 when Klara’s hopes turned to dust. ‘There was a lot of crying in that first phase,’ she says.

Klara and Nick with Oskar - it is hard to take in the magnitude of the family’s tragedy

‘I couldn’t sleep. You lie there, wondering about the future — a future in which everything will only get worse. 

'You have to go through the ordeal of letting everyone know. I couldn’t even find the words to tell my parents.

‘And the effort of telling everyone, of going through this awful prognosis over and over again was just exhausting. 

'No, there was no cure, no hope; no treatment that does not just postpone the inevitable.

‘Some people coped. Others cried. And it made me realise it wasn’t just us who were suffering — our friends and family were, too.

‘Then we learned that Oskar had it as well. I was driving home from a walk with the boys and Nick called me. 

'I remember my eyes blurring with tears; I couldn’t focus. I felt I couldn’t tell anyone. I couldn’t face another procession of sad phone calls. But, of course, I had to.

‘Nick called his parents, who lived close by, and his dad came round at once. I felt destroyed. I thought: “It’s me. It’s all my fault they’ve got this awful disease.”

‘But I pulled myself together. I knew I had to be strong. I thought: “At least they have each other.”

‘I had to pick up the pieces and carry on, because it wasn’t about me, it was about creating a childhood for the boys, about turning a negative into a positive; about making their lives as happy as possible.’

So Klara set about the task. 

Their home in Epsom, Surrey — a wing of a rambling Victorian house — is filled with the detritus of two little boys’ lives: toys, crayons, books.

When I visit, Theodor is at pre-school. Oskar, his arms outstretched inviting a cuddle, sits on a sofa in the playroom, beaming.

It is hard to take in the magnitude of the family’s tragedy. It is difficult even to grasp that there is one: that Oskar has a disease that will, mercilessly and inevitably, rob him of mobility and consign him to a premature death. 

He is a delightful little boy: happy, equable, endearing.

At lunchtime we collect Theodor, a charmer with wide blue eyes and a shy smile.

‘In the early weeks after the diagnosis, Nick would come home from work in London and he’d be so sad,’ says Klara.

‘He’d worry about me, and I’d say: “I’m fine because I’m with the boys and they’re still the naughty, cheeky, happy boys they always were.” I had discovered a cure for my sadness and it was to try to keep some kind of normality for my sons.’

Back at home, Theodor wants to paint, so we go into the little studio next to the house where Klara works and holds art lessons for children. 

Lunch is deferred while he daubs colours onto a canvas. It is part of Klara’s new life strategy that days no longer revolve round rigid timetables.

Klara five months pregnant with Theo in 2011. In June this year both her sons were diagnosed with Duchenne Muscular Dystrophy, a devastating genetic disorder - of which she was the unknowing carrier

She is beautiful, strong, resourceful. Born in Communist Czechoslovakia — her mum an accountant; her father an athlete — she was an active, sporty child.

Nick, too, whom she met through friends while she was studying fine art in London, and married in 2010, has always been physically strong, keen on rugby. Yet neither of their sons will kick a ball, run a race; have children of their own.

But Klara does not dare think too far into the future. ‘We live in the moment, but it is there — the worst — at the back of my mind,’ she says.

She and Nick are making plans to sell the home they love — there are too many stairs which the boys will never negotiate; too many tortuous angles around which wheelchairs will never be manoeuvred — and build another to accommodate their boys’ disabilities.

‘I don’t allow myself to think about the day when I’ll become their carer,’ says Klara. ‘When you look at them both, they make you feel it will all be all right.

‘I don’t know how I’ll react when they can’t walk any more, but I know that day must come. We’ve thought a little about what we’ll say: “Everyone has their strengths and their weaknesses, and because you get tired easily you need a wheelchair.” We haven’t made plans beyond that.

‘I intend to focus on what they can do, not what they can’t. And I try to push worries to the back of my mind.

‘But there are days when the anger just erupts. I was helping Theodor negotiate a few steps to a restaurant the other week. 

'He was making painfully slow progress, because he cannot climb like other boys his age, and he’ll never be able to because his hips and shoulders are too weak.

‘I could sense the impatience of the guy behind us. “He’s taking his time,” he said, and I felt this fury well up inside me. 

Theodor and his little brother Oskar with their parents Klara and Nick 

'I wanted to slap him. He obviously thought I was cosseting my child, but I was helping him because he cannot climb. “He’s disabled,” I said — but I couldn’t meet his gaze.

‘It’s at times like that when you think you’re coping and some random thing will hit you, and you want to weep.

‘But that’s when you have to pull yourself up and think of the positive. We’re extremely lucky. We love each other; at the moment the boys are content.

‘I’m not saying we’ll be OK for ever, but I’m doing my best. I have to keep strong. I have to keep going. I try not to think that my sons will die before me. 

'I don’t know what will happen tomorrow, so I try to enjoy today instead.

‘I hope my sons will fall in love one day. I hope they might go to university. I don’t tell myself: “They’re such poor little boys.”

‘I know they will deteriorate, but I try to think of the best worse, not the worst worse; of what they might do, not what they can’t.

‘When I’m with them and see them smiling and engaged I forget to worry. I think they’ll find a cure. I tell myself: “It will turn out all right in the end.”'

An exhibition and auction featuring Klara's work will be held at the Debut Contemporary Gallery, Notting Hill, London, on December 3 in aid of Harrison’s Fund for research into Duchenne Muscular Dystrophy.

Nick Taussig is running a marathon in aid of Harrison’s Fund on Sunday. Sponsor him at www.justgiving.com/NTaussig/ 

Source: Dailymail