In the early days of Samson's diagnosis, I was so nervous about 'going on' about Duchenne. I was worried that friends and people close to me would be subconsciously thinking 'Oh, she's not talking about Duchenne AGAIN'. This is a fear shared by many, many other Duchenne Mums that I have spoken to over the past 3 and a half years. Why do we feel like this and why is it such a common occurrence? I wondered if it is because many Duchenne parents 'lose' friends along the way. It

I’ve always been a planner. It was almost like a competition with myself, how much can I physically fit into our ‘spare time’. Weekends away, friends to stay, planning for this, planning for that. I guess it’s something I have learned from my folks – they are great planners and fill their lives with exciting, lovely activities as a result. So, since the kids arrived in our lives, 8 years ago, my planning has grown at an exponential rate, with ‘wider planning’ of things like;