Latest: May to July 2025

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 of some snapshots of Oakley’s recent months below.

The combinations of activities of physiotherapy, hydrotherapy, optimal orthotics, mobility equipment, have helped Oakley maximise his limited number of days at pre-school and are helping him prepare for school this September! He has come on such a long way since Easter, through turning age 4, and now into late summer.

We haven’t taken much photo of video of home physio with Faye Mason-Elias BSc (Hons) MCSP MAPCP MRTI over recent months; we have been pushing on building from NAPA, April and
a focus for continual development is joint self-stabilisation through variety of movement, also building neural pathways (which other kids can just do themselves)

ACE SMA Study – Oxford Brookes university & Oxford University ACE SMA study

Oakley has been attending monthly sessions at Brookes (travel costs provided by the study) and had monthly sessions at home from a practitioner delivering physio intervention along with program for the Galileo machine (Explained in our blog here), as part of a research study. It’s been fantastic to make use of this high-tech and expensive machine at home at no cost.

New wheelchair

With huge thanks to charity SMA UK for the grant we were able to get Oakley’s new wheelchair , around 8-12 weeks after he’d outgrown his first!) An epic piece of engineering, it took Oakley some getting used to, not being as light, being slightly bigger, but he has since increased his strength and can push up a 1/12 ramp! He has precise skills and the seeing the joy on his face independently wheeling around exploring, playing, learning is priceless.

Spinecor new spine brace soon

Another trip to London done in the special scanner (far less dose than x-ray) and his current brace has massively helped improve how his back is. We have to continually manage posture, through his range of equipment and activities and maximise physio. We are certainly reducing the severity of a future back surgery if and when needed. The more time these kids can use to develop their strength before any surgeries, the better all round for outcomes , wellbeing, time in school etc. Also regarding hips, we have managed to delay a need for a hip surgery for now which is so good with considering his first year at school.

New van

We recently sold our 2^nd hand Tourneo Connect to pay for deposit for Motability scheme full size Ford Tourneo WAV. What a life changing thing this has been for all of us as now we can go on a trip without needing two full vehicles, and we can roll in his key equipment , and us, and our bags! He can also ride in in his power chair or buggy e.g. for school run, and for now while he is young we can still transfer for him to his car seat.

France, and hydrotherapy

We had a holiday! We made it down to a favourite place of Amy and I; maybe it had been 8 years since our last trip; a surfing destination in South West France. Oakley enjoyed the beach , some paddling, some diving in very small waves, and most of all the swimming pool where he demanded double sessions daily! It was brilliant to be able to continue with his hydrotherapy exercises especially as we haven’t been able to access much over recent months/year. We have been regularly attending term time Saturday morning hydrotherapy put on at a school pool 25mins away, with physio input once/month.

First surf in Devon!

Thanks to some encouragement from a work colleague, equipment from Surf South West, Croyde, and my dad as caddy, I got Oakley out on a specialist ‘Flowt’ board. He’d been asking to go for a while!
Sandchairs are available in certain spots around Devon through ‘access for all’ and also Wave project do amazing things for various participants in need.
-Nick

Preparing for school this September

Oakley has met his teacher, classmates, and his newly recruited 1-1. It’s been an even more intense time getting him school ready than we anticipated, and some provisions, especially as a child moves through nursery/pre-school to school, are complex with which organisations fund and organise things e.g. equipment. Amy had to deal with a serious and significant let down which we were not expecting. School and the council have been brilliant in support and things are moving forward and he’s looking forward to starting!

Powerchair

It’s taken longer than planned, but Oakley now has his first powerchair! His time spent learning to control whizzybug paid off , as once the clever engineer at the enablement centre had done the build, made the modifications and adjustments to fit, Oakley managed to learn the fine control needed to take it home! It’ll be used for school or home for where he can’t access in his manual wheelchair.

Fundraising

We are still looking for corporate sponsorship alongside the continued support from fundraising efforts family and friends are doing. Oakley’s physiotherapy has proved integral to leading him to greater independence, and costs us £600 to £700 pm.

As ever, Oakley’s physiotherapy and orthotics needs add up to a lot of money each year to have to find. Amy and I naturally put all the time we can into our boy and we continually rely on close family financial support and fundraising. The progress he is making thanks to the funds are remarkable for his condition and we are forever grateful to those who have assisted us to date. The difference it makes is stark, evident to all with what he can do and the further independence he has despite an immensely challenging neuro-muscular condition. All of his team notice the difference each time they see him, and understand the importance of the continual private physiotherapy and orthotics, which the NHS can’t provide.

All that we do not only determines Oakley’s physical, social emotional and cognitive development, but also helps the NHS and saves it money. Private orthotics companies and physiotherapists are working alongside NHS practitioners and over recent years Amy and we have facilitated more joined up work and successes.