Jenson & Lettie - Our Spinraza Journey - Always follow your dreams

05/09/2025

11/08/2025

Dose number 21 of muscle juice today!

05/08/2025

This is a great step forward.

https://www.facebook.com/share/p/16E9yMS1uJ/?mibextid=wwXIfr

BIG NEWS for the SMA community! 📣 The new SMA MTA External Assessment Report (EAG) for Spinraza & Evrysdi has been published. We are pleased to see a focus on more patient voices & real-world evidence. Our aim is for full, unrestricted licensing for ALL SMA types and ages. SMA UK will lead the patient group response to NICE. Read more 👉 smauk.org.uk/cnfq

04/08/2025

**August SMA Awareness Month** So proud of these two! We are so grateful for the treatment they receive, it will never cure but helps their muscles to be stronger. 💙🩷

17/06/2025

Jenson’s Boccia training is going well and making progress already! Keep up the good work our boy 💙 thanks to his coach

02/06/2025

Super excited to start his training tonight!

We went to a powered wheelchair sports event a couple of months back and Jenson really enjoyed playing Boccia. We were then contacted by the coach for Team GB who wanted to train Jenson as she was really impressed with him and his eye for detail and feels he can go far in the sport. He will be able to compete for Boccia UK in the Paralympic’s when he’s 16, so for now he will be training every week until he’s ready. Go Jenson! So proud of you 💙

08/04/2025

Lovely few hours out today 🌳🌿

01/03/2025

Pit stop with these 2 before walking back home 💙💗

03/02/2025

💙🩷

13/01/2025

Ready for our muscle juice. Dose number 19 💉

09/09/2024

Dose number 18 done ✔️
Well done our babies 💙🩷

08/08/2024