A man from Northern Ireland who helped create a house specifically for the needs of two young brothers with muscle-weakening illnesses has said that seeing the home’s positive impact on the boys is “all the feedback” he needs.
Theo (10) and Oskar (8) were born with a rare genetic disease called Duchenne muscular dystrophy.
Along with their parents and younger brother, Luca (4), they live in the English Surrey Hills, in a stunning revamped 1930s cottage that recently featured on Channel 4’s Grand Designs programme, as a contender for House of the Year.
The dream home didn’t come cheap, and the boys’ dad Nick initially tried to fundraise for home adjustments by running 20km every day for 20 days.
It didn’t raise enough, but it did catch the attention of a friend’s partner, Belfast man Peter McCall, who works for UK and Ireland-wide property developers, Ballymore.
Peter said: “When I took it forward to my CEO - he has five kids, three sons and I have three sons - you just look at this family and ourselves and… there, but for the grace of God goes any of us. And if we could do something, then we really should try to do it.”
The company provided expert personnel on the site for free and contacted all their suppliers asking if they would be willing to contribute, with all 30 agreeing to do what they could, and Peter explained that the entire project was very much a “community effort” and a credit to all the supply chain firms that stepped in.
"All of them stood up and said, ‘Absolutely – if you want help, we’re absolutely in, tell us what you need’. It was a genuine surprise to say, ‘Oh my goodness, nobody has backed off’,” he said.
In the show, father Nick says the house is intended to help Theo and Oskar “get the most that they can out of life”.
“What happens in the progression of a Duchenne boy, is the muscles slowly waste,” he added.
“By about 11 or 12, they'll probably be in a wheelchair full-time. By about 18, they will be on a ventilator, probably, of some description. And they normally die in their mid-20s.”
As part of the refurbishment, a fully wheelchair-accessible single-storey extension was added to the original cottage, with Theo and Oskar’s bedrooms opening out onto the garden through glazed sliding doors, while behind their rooms is Luca’s room and a wet room.
The hallways have also been widened and the floors have been levelled for easier wheelchair access.
There is an open-plan family kitchen and garden room that connects with parents Nick and Clara’s own sitting room, too.
The treehouse-like roof, which is diagonally intersected and opens like a canopy onto the garden, was suggested to Nick and Clara by architects David Tigg and Rachel Coll.
They said the roof design was “crucial” and that hoists or other equipment the boys may require can be supported by the exposed joists.
Peter said the project took “twice as long” as they thought, adding that it was unlike anything Ballymore had taken on before, as they work more on multi-storey developments in urban areas.
"This was definitely the first time we took on a very small, residential piece of work,” he said.
Nick, Clara and the boys lived in a log cabin at the bottom for their garden for 13 months while their dream home was being built.
"The feedback is when you go down and see them in the shed and you suddenly see that the house provides them with so much more enjoyment than what they had. They get fun out of it. It’s to be used and enjoyed, it’s not just something to be looked at,” Peter noted.
"Those kids have been going to the hospice from the age of four or five to get them ready for what will inevitably be an experience they’ll have in not that long really.
"Their rooms will eventually be turned into sorts of highly technical hospital rooms, but they’ll never look like that.”
The property has made it onto the Royal Institute of British Architects (RIBA) House of the Year long list and was labelled in Grand Designs’ category of homes that “take us by surprise”.
But “it was never, ever designed with the notion of winning a competition”, Peter stressed.
"You meet the two boys, and they aren’t going to be with us that long. You can see the struggle that was going to be in that house to get the best possible lives they could get. Not one bit of it was suitable for taking two kids who are disabled round it.”
The “whole thing” was about helping Theo and Oskar, and nothing to do with “a PR splash” he said.
Dad Nick said: "It achieved what we hoped and dreamt that it could achieve – to be an environment that Theo and Oskar could thrive in, and that actually we could help them thrive in.”
The final episode, in which Grand Designs’ House of the Year winner will be announced, will air on Wednesday December 8 on Channel 4.