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

While I was scrabbling to take a decent selfie at London King's Cross Stationwith the Jurassic World dinosaur for our #JuneGiveaway yesterday. A young couple approached me and offered help. After taking this photo, they asked the significance of the sign. I explained. The young girl looked sheepishly at me and said she knew a kid with Duchenne at school. I asked her how old he was, she said he died at 10. 10, not late 20s, or 30s, but 10. That is not good enough for me, and t

So, how do you go about delivering the information that your son has a life-limited muscle wasting condition, will lose the use of first his legs, then arms, need a power-chair full time and everything else associated with Duchenne. Its hard enough trying to find the words to tell adults. Now imagine trying to tell children. I know. It seems impossible. Its like ‘the birds and the bees’ once you start down the road of truth, there is no going back. But there are ‘milestone p

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;

This is a weird one... I remember sitting writing the words below through unending tears, shaking, hardly able to see the screen but knowing how important it would be for my future self to write these things down, knowing that I would need to re-read them so many times over my lifetime. Knowing that these words would be the first hand account of the biggest changing point in our lives. In the following 2 years, we have become experts in Samson's condition. We have adapted, gr

"No, sorry", or "I already donate to NSPCC" were the words I usually uttered to 'chuggers' on the streets; Professional Fundraisers paid by charities to raise funds. I would audibly groan at the umpteenth 'JustGiving' page on Facebook and would scroll, scroll, scroll..... Oh how things change. In 2015, our son, then 3, was diagnosed with Duchenne muscular dystrophy (more about that another time). Due to the nature of the condition, it's degenerative, so time is of the essence