Duchenne muscular dystrophy
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.
Harrison sobbing uncontrollably for the best part of an hour, I had climbed on to his bed and hugged him, stroked his hair, rubbed his tummy, held him close, doing my best to console him... him repeating over and over again how much he hates his life and how weak he is.
My son Archie was diagnosed with Duchenne Muscular Dystrophy in 2008, aged just 3 years old. It is a severe, degenerative, muscle-wasting condition, which will one day lead to him being unable to move by himself and will significantly shorten his life.
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.
The wheelchair is a constant reminder, more and more often it is in the car and not gathering dust in the garage, any trip that involves a now short walk requires the wheelchair to come with us.
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.