Blog

We were blown away by the support of the parents’ community of Oakley’s year group at school, organising a summer term fundraising event for Oakley’s August physiotherapy course. This was with Neurokinex at the new Bristol location https://neurokinex.org/ and he has just completed all of his planned sessions. There was also a families’ afternoon celebration…

Spinecor For his latest brace from Spinecor Oakley had two trips to Sheffield and one to London including Eos scan. It’s working so well for him including most of his time in school wearing it. He has an Xray and Eos scan alternately every 6 months and his back is actually improving due to the…

Physiotherapy and Orthotics Oakley has had another busy few months! As ever, he is making great gains. The rate of appointments in the diary don’t let up and Amy has had to organise a vast array of things for him many of which have not been straightforward. Check out the galleries for photo and video…

Oakley gave everything full efforts during his 3rd week at NAPA London, developing new strength-skills to aid him in all functional movement. Amy and I learned as much as possible once again from his physio team, to emulate and continue with momentum as much as possible at home. 3 x 55 minute sessions with an…

Oakley is once again absolutely smashing his daily 3 x 55min sessions, 5 days pw. Its hard to believe it’s only been 6 months since his first NAPA intensive September 2024 , but there’s been a hell of a lot to do in that time. Ofcourse our boy is older and bigger, soon to be…

We’ve managed to pay for NAPA 2025 coming up this April thanks to a large donation from family Katherine & Ian,and through various friends, family fundraising over recent months including Great granny Betty.Thank you so much – every bit makes a difference and lifts us when we see the justgiving page.We’ll aim to do some…

2nd/2 appointments to London orthotics this winter – Thank you again Oakley’s uncle Jonny for funding the new AFOs.Amy and Nick covered £575 for measurements, scanning, and the initial gait lab analysis consultation; Jonny covered the £2630 for the manufacturing of the AFOs, the new custom shoes, gait lab & fine tuning, and fitting The…

21st January saw Oakley at his first site at Oxford Brookes university & Oxford University ACE SMA study . This followed 9th January 2025 first home visit.We are fortunate to be able to have a Galileo machine at home for 12 months as we are participants in this study to show how hands on physio…

Massive thanks to uncle Jonny providing Oakley’s 2nd spine brace from Spinecor ~£2k for this one, lighter construction as Oakley has made excellent progress. Research will be feeding into NHS; Spinecor has already won a highly recognised medical award. This process of reviewing the change to Oakley’s spine before, during and since the 1st brace…

My cousin Caroline along with two friends trained up to take on a 20mile hike. It included seven major summits with a 1200 metre ascent , on September 21, and they made it under their ten hours target. Her fundraising efforts for Oakley were covered by bbc Leicester online. “We did afternoon tea with Prosecco…