Last Sunday my Great Uncle John and Great Auntie Dee set about walking 26 Kilometres as part of the 2.6 challenge for Team DWAD. They were lucky with mostly fine weather and finished the challenge within a week. “During our walks we climbed just over 1600 feet (we do live on the highest hill in... Continue Reading →
Thank you #26ChallengeTeamDWAD
Thank you to everyone who took part in our #26challengeTeamDWAD on 26th April 2020. We had over 35 challenges take place and have so far raised just over £2,000….please help us and donate to find a cure for Duchenne. All money raised is going directly to our charity partner Duchenne UK....https://www.justgiving.com/fundraising/26challengeteamdwad
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 →
Saracens – what a day!
I attended the most AMAZING day today with Saracens RFC in partnership with Duchenne UK. Myself and my Saracens fan Grandpa were given the honour of walking out the match ball....and the whole family were given five star treatment for the whole day. Wow wow wow 🤩 Thank you Saracens for giving the whole family... Continue Reading →
Another day, another visit to hospital….
Another day, another visit to hospital.... Last week I was in for more physiotherapy to review my daily stretches and today I was in for Respiratory Consultation. Today went well, the consultant says I show no signs of issues with breathing, coughing and generally lung function. ✔️ Last week my community physio upped my stretches... Continue Reading →
My house is complete!
As a little boy with an incurable, life-limiting condition my family and myself have learned that we cannot survive life, as we now know it, on our own. We have ‘accepted’ that to provide for me, make my condition and it’s deterioration liveable and enjoy life as we now know it, we must accept help.... Continue Reading →