- In June Theodor Taussig, three, and his little brother Oskar, 11 months, were both diagnosed with Duchenne Muscular DystrophyÂ
- They cannot produce dystrophin – a protein needed to build up muscles
- As a result every muscle in their small bodies is deteriorating inexorably
- There is no cure for the devastating and fatal genetic disorderÂ
- Parents are determined to make each day happier than the last for the boys
Frances Hardy for the Daily Mail
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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. Â
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.’
Oskar, 11 months, is cuddled by his big brother Theodor Taussig, three. In June both were diagnosed with Duchenne Muscular Dystrophy, a devastating genetic disorder – there is no cure
Meanwhile, her younger son, 11-month-old Oskar — smiley, placid and cuddly — is diverted by a helium balloon in the shape of a cat.Â
He watches it sail above him and chuckles.Â
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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 nowâ€,’ she says.Â
‘I’ve stopped rushing around as I used to do, creating hundreds of unnecessary tasks for myself.Â
‘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.
Theodor and his little brother Oskar with their parents Klara and Nick – who are making it their mission to ensure their boys have the happiest life possible
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.Â
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’.
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