To mark World Duchenne Awareness Day, this week’s blog has been written by Nick Taussig, a parent of two boys living with Duchenne Muscular Dystrophy. He shares the story of how he and his friends designed and built a home adapted to his sons’ needs. It’s a heartwarming read that shows the great things that can be achieved when people work together.
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.
I run another marathon on 18 November this year in aid of Harrison’s Fund, and can be sponsored here: https://www.justgiving.com/fundraising/nick-taussig3
We would like to thank Nick for sharing his story on our blog. You can find out more about adapting buildings for physical disabilities from the National Disability Authority’s Accessibility Toolkit.