“Holding it together when I was speaking at the Newly Diagnosed family event” was one of my colleague’s proudest accomplishments this...

In April 2016, 6 months after my son was diagnosed with Duchenne muscular dystrophy, I joined the Action Duchenne team. I felt I had to...

After diagnosis, I knew that we would need to eventually either move on or make some drastic changes to the house.

People often say, "What I'd do to go back in time, to my teens/twenties". I absolutely wouldn't (apart from to be able to see Helen...

Months and months ago, I thought it would be a good idea to sign up for to fly down a line at over 100mph for charity. I then changed my...

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...

I just received a call from the Head at Samson's school. He had his first piano lesson today. Things like this seem so insignificant to...

10th October marks the 3 year anniversary of the day Duchenne swooped into our lives. People often ask me, did you ever know something...

When your child is first diagnosed with Duchenne, you are launched, headfirst into an unknown world. A world where long words and...

I thought it was a great idea and was chuffed to bits when the Head agreed and I took the bike in. Samson, on the other hand was not...

I took the kiddos to Shepreth Wildlife Park at the weekend, and while we were there, Samson came out of the blue and told me he wanted a...

While I was scrabbling to take a decent selfie at London King's Cross Stationwith the Jurassic World dinosaur for our #JuneGiveaway...

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...

When I meet new people I often tell our story, about Samson’s diagnosis with Duchenne and the life we have. I do this, not for pity, or...

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...

I read a really powerful blog* recently about the emotional toil we experience, particularly us women. I won't go into it now, as is...

This is a weird one... I remember sitting writing the words below through unending tears, shaking, hardly able to see the screen but...

"No, sorry", or "I already donate to NSPCC" were the words I usually uttered to 'chuggers' on the streets; Professional Fundraisers paid...