British novelist, film producer, father of two beautiful boys with Duchenne muscular dystrophy
British novelist and film producer. Founding partner of Salon Pictures and author of, most recently, The Distinguished Assassin. Also father of two boys, Theo and Oskar, both of whom have Duchenne muscular dystrophy, a fatal genetic disease.
It was World Duchenne Day on 7 September. Much happens in the community, as parents around the world continue to strive for a significant treatment or cure for their sons: there is nothing quite like the motivation of a parent watching their child grow weaker by the day. We will do anything for our children, die for them if we must.
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.
I bend forward, over his body, and reach for his calves, both of which feel more like small boulders than failing leg muscles. He relies on these like no other, as every Duchenne boy does, while he can still walk, to keep him upright and moving forward. He's having contractures, his calve muscles shortening and cramping. I squeeze one of them, and feel him flinch with pain.
Gove, Farage, Johnson, Duncan Smith, Murdoch, Dacre and other Brexiteers... I will not forget the consequences of your actions, my sons will not forget, other sick children will not forget, and their parents will not forget. I hope you realise in time what you have done.
This Sunday 26th June is Blue Hair Day, a brilliant annual flagship campaign run by Harrison's Fund cooked up by a bunch of big-hearted mums to raise awareness and funds for Duchenne muscular dystrophy.
I write this post over a week after we completed The Big Bad Ride, a 460-mile endurance cycle from Edinburgh to London in aid of Harrison's Fund, a small charity working hard to find a cure for Duchenne muscular dystrophy, a fatal disease which affects my two young sons, Theo and Oskar.
Before I learned that my sons might not reach adulthood, I loved them, but differently from how I do now. My love was, in many respects, a passive one. The love I have for them now, though, is more conscious, determined, deliberate.
I do not want Theo and Oskar to die before me. No, I want them to live far beyond me, to experience all of life, its many facets and stages. What sustains us, Klara and I, is trying to realise this, to do all we can to ensure they, and other Duchenne boys, lead long and full lives...
The parent of a disabled child, you are suddenly forced to look with a hard and discerning eye at the society your children live in. Will it nurture them, in spite of their condition, or will it neglect them?
20/03/2015 17:09 GMT
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