Defending William against Duchenne

09/18/2026

Following on from his last sleep study and ENT clinic results, William has been back to see the respiratory team.
Lung function good results were stable - which is great.
However….Oxygen levels when sleeping are unstable 😩
The ENT appointment in the summer informed us that luckily no surgery is needed as he has no adenoids or tonsil concerns. This is usually the cause of sleep apnoea in ‘normal’ children. As we know William isn’t ‘normal’ - as we were told today 😖 He has duchenne! So the only way his sleep apnoea is going to go is worse!!
Solution today was to refer him to another respiratory clinic as he will need to be assessed and fitted for his machines.
That’ll be 8 specialists this poor lad is now under at hospital! More appointments, more machines, more decline!

His usual smile wasn’t there today 😢

All these conversations go in, they sit on him and he’s digesting. I’m watching as his mum, whilst my heart breaks to 100 pieces I am also full of love and admiration for him. What a strong 13 year old to be told all of this, take it in and not cry.

We had a little chat on the way back to the car and I checked he understood it all - quite solemn he replied “yes”.

William I’m so sorry you go through this - but I am so proud to be your mumma with you every step 💙💙💙

09/08/2026

09/04/2026

In advance of the epic event tomorrow we cannot thank you all enough. Especially New Summit Personal Training who has created the most amazing support for his event 💙💙💙 Jo Eames Matt Eames

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 🫶🏻💙