duchenne

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.
Now I don't totally agree with my friend that said this to me, perhaps though I just haven't yet been beaten up enough by Duchenne, had it rip me open and grab hold of my heart yet. Squeeze the life out of it yet. Chip away at and break my will to hope enough yet.
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.
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 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?
Last year when the Manchester dog's home went up in flames I was watching the television and my first thought was how proud I felt that the UK was such a generous nation of animal lovers. However this was swiftly followed by my second, which was, how can we possibly justify raising of £2million for animals when there are children like my eight-year-old son, Harrison, dying every day from fatal illnesses. Harrison has Duchenne, a disease that means he probably won't live to see his 20th birthday. In 2011 I founded Harrison's Fund to raise money to fund research to develop a cure.
The vast majority of smaller charities are parent led and born out of a desire to have some element of control over a situation that is often out of their control and with little hope. ..
Theo was not just developing slowly but was very ill, carrying a fatal genetic illness which would cause his muscles to waste away and kill him before he becomes a man. The pediatrician reassured us that this moment, the diagnosis, is the worst part, but stressed it would get easier as the days, weeks and months went by. But how could it? I thought.