In 2014, when Theo (now 5) and Oskar (now 3) were diagnosed with Duchenne muscular dystrophy - a devastating fatal muscle wasting disease that will force them off their feet and into wheelchairs, and likely kill them before they become men - we knew right away we'd have to move.
We were living in a tall thin house in Epsom with too many stairs, the end wing of an old Victorian mansion, the very worst kind of accommodation for two disabled children. And so, in February of this year, we moved, to a rundown 2-bedroom 1930s bungalow with a half acre plot in the heart of Box Hill, a magical place with a wonderful garden that will nurture the boys' hearts and spirits in spite of their life-limiting disease.
The plan is to transform the house into a very special place for Theo and Oskar by creating the best possible barrier free home. But we need some help to do this.
The majority of disabled homes are poor, very poor. They do not enable their occupants, rather disable them further. We need to open the bungalow out, to create a light and spacious living environment, which maximises Theo and Oskar's ability to move around freely (two wheelchairs require space); makes them feel connected to the outside world, in particular the beautiful and rather magical garden just outside; provides Theo and Oskar with their own bedrooms that open onto the garden (they are currently sharing with mum and dad, and it's getting a little cramped); optimises the building's potential by demolition of the old garage; is mindful of our future needs, in particular to accommodate a carer; and achieves all this for a budget of £100k.
The business I work in, film, will always be uncertain and sporadic, and cannot be relied upon to fund a necessary venture such as this. Rather, for us to get on and make Theo and Oskar's new home, it needs something else...
Now... I commute 5 days a week into London, and when I'm not at work, I'm busy helping Klara with Theo and Oskar. Time and money are limited. It's therefore about doing something that means I can still work, but also be with Klara and the boys.
And so to 100km a week for 4 weeks. Running 20km, a half-marathon, 5 days a week. That's 400km. And doing this from the start of December right up until Christmas, from 5am - 7am every morning, because that's the only time I can do it, so I can still do a full day's work and be with Theo and Oskar before school and bedtime.
I'm a big lump, better equipped to shot-put than long-distance run, and though I'm a morning person, the thought of rising at 4:30am Monday to Friday for 4 weeks and pounding dark winter country roads for 2 hours before even getting to work hardly fills me with glee. It will not be easy, but it will be worth it, for Theo and Oskar.
You can sponsor me here: https://www.gofundme.com/theo-and-oskars-house-2unp74n8Suggest a correction