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…
Oakley in his 3rd week next week at NAPA – Neurological and Physical Abilitation – centre London – He is progressing incredibly well and seems to be enjoying the challenge of the hours of hard graft day in day out ! What a champ! The combination of all family and friends and public donations during…
Aunty Katherine, uncle Ian and family hosted a fundraising tea party – Thank you to you and your friends so much from us! (Nick, Amy and Oakley). They had 38 guests and put on a special event . “…It was a great opportunity to spread the word about SMA. Many guests were unaware of the…
July 2024 – 2nd trip to Italy to it’s nation’s world-renowned specialist facility: Progettiamo Autonomia (Literal translation ‘we plan autonomy’). Family made changes to fund another trip (costs not shown on here) and thank you to my brother funding Oakley’s Ankle-Foot-Orthotics since shown as an offline donation via Tree of Hope ~£1k). Oakley did well…
Massive well done and huge thanks and appreciation to Steve Thorp who ran the Exeter Marathon on behalf of Oakley, and through his linked justgiving page https://www.justgiving.com/fundraising/manchester-marathon-for-oakley raised at the time of writing £951! with more trickling in post race. Amazing effort fundraising for Oakley and to have to push on through in one of…
End of content
End of content
