the times Saturday December 18 20218 Body + Soul
wooden roof that can be used to support
hoists and slings. There are wide door-
ways, generous bedrooms with sliding
doors that open onto the garden, and it’s
airy and barrier-free. In A Space in Time,
Theo whizzes through the kitchen in his
wheelchair as if it’s a racing car.
“He embraces all that stuff,” Nick says.
“So you’re in this strange position where
for parents it’s another ‘tragic milestone’
— the milestone of the first manual wheel-
chair, the milestone of the first power
wheelchair, the milestone of the hoist that
has to lift them out of bed (Theo’s 50kg
now) — but for him, this is progress.”
While the demolition and remodelling
were done the family lived in a specially
built wooden cabin in the back garden.
“Theo and Oskar were still walking,” Nick
says. “They were more mobile then. We
had a window of time.” The boys adored
life in the cabin, but after 13 months withLooking back, he says, “A lot of
the time we don’t realise it, [but]
we’re acting out of desperation.
I found a lot of release in just
pushing my body.
“I was pretty obsessed with
that idea that you find a cure
and everything will be OK. But
life’s not like that.”
Nick says this is a lesson learnt
by many parents of children with
life-limiting diseases. “You live
all your life in the future, and you’re also
living all your life in fear. Because basically
you’re saying, ‘All I care about is finding a
cure for my sons.’ There’s a point where
you go, ‘I’m pissing on the present.’ You
have to make a choice.”
As he observes, one of the biggest battles
the parent of a Duchenne child faces is not
to project their own tragedy onto them.
“That’s the battle. It’s so easy to fall intothat trap of tragedy. And it is a trap.” In
reality, Nick adds, “people don’t need pity,
they just need help and support.”
Nick’s 20km for 20 days endeavour
raised £12,000 — enough to commission
an architect and structural engineer to see
what might be possible, but not enough to
pay for the remodelling.
Then he received a call from an old
friend. “She said, ‘Look, I think we can
help.’ ” The friend worked for Ballymore,
a company that builds high-end apart-
ments. They teamed up with the architec-
ture firm Tigg + Coll, which sought advice
from occupational therapists and the
family about how the layout design could
help the boys as the disease progressed.
The House for Theo and Oskar was built,
Nick says, on vast amounts of goodwill.
The demolition and build took nearly
two years and was finished in August 2019.
It is stunning. The home has a strongT
heo Taussig turned ten this
summer. “Right, I want to
have a birthday party,” he
told his parents, Nick and
Klara. So all of his friends
came to their house. It was
a day of joy. The children
spun plastic plates on sticks in the garden
and got to stroke an owl and a beautiful
grey python. There was a Pokémon cake,
one guest came as Harry Potter and the
sun shone. “It was very special,” Nick says.
As the birthday boy has limited mobility
and most of his friends are in wheelchairs,
it was only possible because their home
in Surrey — which was shortlisted for
Riba’s House of the Year prize and featured
on Grand Designs: House of the Year 2021 —
has been designed to enable anyone with
serious disability to move around freely
and independently.
Seven years ago Theo and his brother
Oskar, who is now eight, were diagnosed
with Duchenne muscular dystrophy
(DMD), a disease that causes the muscles
to slowly waste.
“By 11 or 12 they will be in a wheelchair
full time, by 18 they will be on a ventilator
probably, and [those with the condition]
normally die in their mid-twenties,” Nick
says. “When you get a diagnosis like that
— and you don’t imagine you’re ever going
to get thrown something like that — the
response is often quite radical.”
At the time, the family was living in a tall,
thin Victorian house in Epsom, Surrey.
They knew they had to move.
“We were quite impractical,” Nick says.
“We bought a lovely bungalow in a beauti-
ful part of the world but we had no money
to renovate it.”
There were mushrooms growing in the
bathroom walls and water
leaking through the spot-
lights. Nick is a film-maker
and his intimate, honest
documentary about their
family life and the disease,
A Space in Time (available on
Apple TV), shows the scale
of the challenges they were
facing. Then he had, as his
wife puts it, a crazy idea. Nick
decided to run 20km every
day for 20 days in a row to
raise the cash. “I’m definitely
not Mo Farah. I run like a
shot-putter,” he admits.
Klara says drily that he told her:
“It’s not going to affect family life because
I’m going to run before work.”
He would rise at 4.30am, then run from
5-7am, the same route from Box Hill to
Burgh Heath, in Epsom, and back again.
Since the boys’ diagnoses he’d already
thrown himself into fundraising for their
friends in the DMD community — doing
cycle rides and running marathons — so
he was quite fit, but this was extreme.
The house that changed our little
A couple have built
a light-filled home
designed for their
sons, who have a
rare genetic disease.
By Anna Maxted
L
th
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pth
a
lib
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allyourlifdher:
Nick and Klara Taussig
with their sons Luca,
Oskar and Theo. Above
right, enjoying the open,
airy renovation