Why are we doing this? How you can help us!

William, our beautiful, caring, funny, articulate little boy was diagnosed with Duchenne Muscular Dystrophy in January 2016 at just 3 years old. Duchenne MD is one of the most common fatal genetic disorders to affect children around the world. 1 in 3500 boys are affected with DMD. It is a devastating, progressive and currently incurable... Continue Reading →

Featured post

Strava TeamDWAD smashed target 8 days early!

The month of November hasn't finished yet, well we have 8 days left, but the 71 athletes of Strava TeamDWAD have smashed our target. So far this month the 71 amazing people have amassed 688 hours of running, cycling or walking! 👏 👏 This totally smashed our target of 535.4 hours linked to William's type... Continue Reading →


The global pandemic of Covid-19 has not only shut down life as we all know it, but it has also stopped fundamental fundraising across the charity sector. It has placed me in the ‘extremely vulnerable’ group – unable to step foot outside our boundary, to go for a walk or go for a bike ride.... Continue Reading →

What is rare

We are all our own rare breeds aren’t we? We all have our own little quirks, habits, rituals, behaviour, manners ….. these can be annoying or endearing – it all depends who you are and who you affect with them. The majority of people choose to behave in the way they do – learned or... Continue Reading →

Up, up & away!

Hi everyone, Sorry I’ve been a bit quiet, I’ve had my 7th Birthday and back into the full swing of school! So, something a little exciting finished being built today - MY lift! Now, I already know this is MY lift and certainly not my little sister Phoebe’s!! 😉 I know it’s for me because... Continue Reading →

Turning on the Christmas Lights

Today I was given the honour of turning on our Village Christmas Tree lights 🎄whilst the brilliant Codicote Community Choir sang some carols. Thank you so much to our wonderfully supportive community for giving me this opportunity - I got to use a plunger which was very exciting! Thank you James Howe and all of... Continue Reading →

Back to Addenbrookes ..

Another 6 months have passed so I’m back at Addenbrooke's Hospital today for my neuromuscular check up. Height, weight and BP all ok as I check in for the clinic. I’ve grown a bit more - which is fabulous as not growing is a side effect of steroids. I’ve not put on weight - again... Continue Reading →

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