Defending William against Duchenne

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 ❤️❤️

03/14/2026

Epic morning and then spontaneously onto to witness about 100 supercars drive up! AMAZING 🤩 Thanks for having us! 💙

03/10/2026

Proud to have captained my school Boccia Team in the North Herts event - we’re now going onto the County Competition 🙌🏻🙌🏻

02/27/2026

10 Years of our story. No fairy tale ending for us but we’re giving him a life full of as much joy as we can.
Life is so hard for this boy - but as always look at that smile 💙
Please share, raise awareness of on this day
Thank you as always for your love and support ❤️

01/26/2026

2016 - I’m not sure I want the memories thanks!

Everyone is showing pictures and memories of 10 years ago – 2016. I’ll be honest this is not a year to celebrate, remember or relive. The photos of me are full of bags and sadness. 10 years a…

01/18/2026

The face I pulled on my 13th Birthday to the present of tickets for this summer!! &son

01/12/2026

A day of 2 spinal xrays and DXA scans today. We have a call with my scoliosis consultant next week to (fingers crossed) hope my spine hasn’t started to curve. Having duchenne is one thing - the effects of the drugs is another; steroids cause low bone density which = crushed spine and therefore probable curvature of the spine at some point. It’s not enough that all my muscles don’t want to work for me but my bones too are taking a hit. 😩😩
The positive - a day off school and time with mummy! 💙🫶🏻

01/10/2026

When you can’t stand, bear weight or walk, the freedom of the water is just amazing. I can move my legs around, I’m free!
This is one area your funding goes towards - 2 sessions a week with mummy or daddy costs us £250 per month for pool hire. Thank you for your continued support to enable me to have this freedom. 💙🫶🏻

12/01/2025

Another week - another appointment. Although I can’t walk or bear weight on my legs I need to make sure my ankles and calves stay as flexible as possible. Therefore I have to wear splints every night in bed! All my doctors are shocked I just get on with it and don’t fuss - mummy and daddy always proud 😊