In October I am running the Royal Parks Half Marathon for the second time. Here's why:

Being told that your child has a genetic condition is pretty big news to deal with. That is the situation that Jen and I found ourselves in last November when we were told that our son, Sydney, has Congenital Myotonic Dystrophy (DM1), a progressive muscle wasting condition. Bigger news still was that DM1 is passed via a dominant inheritance pattern, and we learned that Jen therefore has a lesser form of the condition.

DM1 can be an extremely dangerous condition for a baby to have as it can affect breathing muscles and the heart (among a great variety of other things). Despite medical advances, some babies die in the neo-natal period. For children who survive, physical development can be delayed/limited and muscle function is expected to deteriorate slowly from early adulthood, in particular around the joints. Learning difficulties are also a possibility. When we contacted them, Muscular Dystrophy UK connected us with the right people who could answer all our questions and quell our anxieties. 

We seem to have been extremely lucky with Syd, who is developing brilliantly in pretty much all respects and appears to be on the milder end of the Congenital DM1 spectrum (touch wood- it is still early days). Many children are not so lucky and are very severely affected by this and other conditions which come under the Muscular Dystrophy umbrella, such as the devastating Duchenne variety.

Muscular Dystrophy UK have been investing in research since 1959 which really has contributed to improved understanding of all these conditions, and offering real hope for the future treatment of muscular dystrophies. They offer support and information to families like mine.

Thanks for reading and I hope you'll sponsor my efforts- believe me, it will make a big difference to everybody who is affected by muscular dystrophy.