The Huffington Post – Blue Hair Day

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 idea to go blue for the day, sport a silly wig and get involved in the Duchenne cause first came from a group of mums at my eldest Theo’s school, who, when he and his brother Oskar were first diagnosed, wanted to do something to help. These mums saw very clearly that something had to be done to stop another generation of boys dying from this fatal genetic disease. And so they came together and did something about it.

I find myself often sounding like a broken record, and worrying that those close will simply tire of me when I say over and over that if we do not do what we can as soon as possible then another generation will die. This is not a politician’s mantra about whether we remain in or leave Europe, a slogan about open or closed borders, a catchphrase about whether the United Kingdom should devolve or stay together. It is far more important than all of these: it is about doing all we can to stop another generation of boys from dying, because if we do not, their lives will be very difficult, this is certain, and they will die.

Theo turns five in just over a month and his wheelchair is on the way. The disease takes its grip already, distorting his body and unsettling his mind: the brain also needs dystrophin, the vital muscle protein he cannot produce. Over the next few years he will become more reliant on his chair, and by adolescence will need an electric one. His body will then fail him further, his spine curving, and his heart and lungs growing steadily weaker. By his late teens he could well be locked in, able to speak and operate his chair, but unable to breathe without a ventilator and do anything without a carer, even scratch his nose. What life is this? Need his life be this?

Theo and other Duchenne boys possess an innate and intimate understanding of their condition. They know they are different, that they grow weaker not stronger, that their futures hold something very different. But they carry on, rising to the great challenge of their disease, not wilting in the face of it, and finding another way to be and to experience life, which is as rich, complex and meaningful as any other life. But how I, and many other Duchenne parents, want our sons to be able to live another life, if they so choose. Their incurable disease robs them of this choice.

There is nothing more important for Duchenne sufferers and parents than to have others beside them, acknowledging their pain and predicament, and working with them, alongside them, hand-in-hand, to change their fates. My wife Klara wept the other day because she felt no one really heard her cries, and the cries of other Duchenne mothers. We all need to know we matter; we all need to know others care. Though science moves ahead, with great promise being shown in a wide range of treatment approaches, there is still much to do, and unless we are together, another generation of boys will die: I say it again, this mantra, but only because it is the truth… and must be said again and again until it is heard by all and a significant treatment or cure is finally found and made available to all.

There might be more happening than ever before in the Duchenne world, and yet unless we are together, supported by as many people and organisations as possible, we will not beat this cruel disease. Blue Hair Day asks all of us to come together for the day as one and show a collective will, humour, spirit and courage to finally beat this big bad disease, which is robbing thousands of boys of a future. Let us face it, let us beat it, let us all get involved: