Defending William against Duchenne

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Defending William against Duchenne

William, our beautiful, caring, funny, articulate little boy living with Duchenne MD Boys with DMD do not produce dystrophin.

William was diagnosed in January 2016 at the age of 3 with Duchenne Muscular Dystrophy (DMD). This was a diagnosis that was totally out of the blue and a complete shock to the whole family. Duchenne Muscular Dystrophy is one of the most common fatal genetic disorders to affect children around the world. 1 in 3500 boys are affected by DMD. It is a devastating, progressive and currently incurable, m

uscle-wasting disease. Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin, a protein that plays a key structural role in muscle fibre function. Life expectancy is improving as standards of care and knowledge about Duchenne in crease however, there is currently no cure for Duchenne. We launched our site & in January 2018 welcomed the start of fundraising for William now and in the future. To make a donation:
Cheques payable to 'Defending William Against Duchenne'
Bank transfers can be made to Account:83768740 S/C:20-05-73
Paypal: [email protected]

You can see our Family Fund Page on https://www.duchenneuk.org/defending-william-against-dmd or donate to https://www.justgiving.com/campaign/defendingwilliamagainstdmd

08/24/2026

This event is going to be epic! Thank you so much to New Summit PT for creating what is going to be an absolute blast - crazy squatting, live DJ Jason Lee Parish, bbq courtesy of Liam Grey, the bar open TheJohnClements and to end an amazing day the brilliant Aftertone will be playing into the evening.
Sponsor all the amazing squatters in the link in my bio 💙💙💙

08/15/2026

If anyone can donate a raffle prize for Saturday 5th September’s event please can you get in contact with Jo Eames Jo Eames Matt Eames New Summit Personal Training

08/07/2026

ENT appointment today for the first time. This is due to the fact that I now have sleep apnea - another thing bought on by Duchenne.
I had to have numbing spray up my nose followed by the camera down my nose and throat to check for grommets and any issue - luckily this is all fine so I am skipping surgery and now am back to the Respiratory team for them to decide next steps.
This could be a CPAP machine at night - but we will wait and see.
Another decline - another lovely hand of duchenne 😩

07/31/2026

Who is signing up - come along, see us all and just have some fun! Weights can be simple squats through to crazy weights ###x

07/13/2026

The next challenge is on…..New Summit PT are hosting a Squat Challenge!

You don’t need to be able to back squat - anything goes - goblet squat, split squat, front squat

The target is 200,000kg in one afternoon!

Your reward - a great DJ, food, drinks and a band in the evening - make a day of it!

Please can you contact New Summit PT or Jo Eames or Matt Eames if you can make it along on 5th September 💙

Link for fundraising will be shared soon! Share this post far and wide

Thanks all - let’s makes this an amazing day 🙌🏻

06/30/2026

My school invited me to create an “All About Me” board so that I could talk to lots of teachers and staff at the school and they can get to know my hobbies a little more.
Daddy was super proud of me this afternoon as I chatted away to lots of adults from my school - especially when they asked about cars!! 💙💙

06/26/2026

On one of the hottest days I braved fasting bloods at Addenbrookes in the early morning followed by an afternoon at the Orthostist at Lister….. very little air con …. But still a smile on my face 🫶🏻💙

05/08/2026

Whilst this news is wonderful for the community of Duchenne after many years of fighting - it is also devastating for me.

This means I won’t get the drug that we campaigned for, because I cannot stand or walk. How does this make sense, how is this inclusive?

My family are beyond devastated - no words can describe how we feel. Mummy and Daddy gave me an extra big hug before I went off to school today, knowing that my future is definitely uncertain. My decline continues, my arms are stopping to work and my body is failing me. This drug could have plateaued life for a while; now we just accept I continue to decline.

Please give us time to take this in, it’s a stab through our hearts. 💔

04/10/2026

National Sibling Day - this one is amazing!

Her life isn’t the same as her friends and her sibling life isn’t the same as she’s also my carer.

She takes life by the horns and gives it everything - she deserves to have it all ❤️❤️

Address

Los Angeles, CA

Website

https://defendingwilliamagainstduchenne.wordpress.com/

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