The charity that will benefit from our 2016 Messiah for All is Action Duchenne (www.actionduchenne.org). Here Trish Kerrison, who has two sons with Duchenne muscular dystrophy, describes the condition and its impact on her family.
Duchenne Muscular Dystrophy (DMD) is a severe and life-limiting muscle wasting condition. It is caused by a genetic fault usually passed from mother to son*, although it can also occur in families that have no previous history of the condition. (DMD can also affect girls, but it is very rare.)
At any given moment there are approximately 2,500 boys and young men in the UK living with Duchenne Muscular Dystrophy.
When these boys were born, there would have been nothing to suggest they were not the healthy babies that every parent hopes for. For a few years they would have enjoyed life alongside their peers, running, jumping, playing football and doing all the other things that small boys do. But by the age of about four or five, the muscles would have started to weaken, the boys would have fallen down, found it difficult to jump, and generally been unable to keep up with their friends. Diagnosis is most commonly made about this time, quite long enough for a younger brother to have been born with the same condition.
Duchenne Muscular Dystrophy weakens all muscles – muscles you need to walk, to chew, to scratch your nose, to use your smart phone, to breathe, to cough, and even for your heart to beat. Until quite recently, boys were expected to live only until their teens; now it is common for boys to live to their late twenties and beyond. From about the age of twelve, this is a life lived from an electric wheelchair, and as time goes on the boys will need more and more assistance, both technological and personal, to get from one day to the next.
There is no cure for DMD, and despite the best efforts of the scientific community, a cure is still a long way off. There have been advances in symptom control, but there is still much work to be done to understand fully the effects of this disease, and to understand how best to support boys to live the lives they want to lead.
I have two sons with DMD, Steve aged 22, and Joe aged 21. They are young men with drive and ambition. They have travelled throughout Europe, they have gained degrees, they go to football matches, they play Powerchair Football, they play loud music, they drink unseemly quantities of Jack Daniels and Coke – sound like anyone you know? Young men with DMD are remarkable only in that they achieve all these things against a backdrop of disappearing muscle power and a constant battle for the services and equipment that they need.
In the scrabble for funding for research and equipment the voices of 2,500 boys and their families are all too easy to ignore. We are delighted that your choir has chosen to raise its voice in support of Action Duchenne and thank you for your efforts to help improve the life chances of these young men.