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 get-together which was fantastic, with games for the children and an opportunity for us to say just how much this all meant to us, supporting the ongoing financial need to make immediate and life-long differences for our son. The event couldn’t have happened without the school’s support too so we are also most grateful for that.
In the context of this condition (SMA type1), without specialist physiotherapists teaching and facilitating brand new learning of movement, skill & strength acquisition, kids like Oakley would be stuck plateauing, and things get harder for them as they get bigger!
‘Move your way’ encouraged kids to complete sponsored activities in any kind of movement! Some cycled, some swam. The total raised, incredibly, covered a 3-week course of 3 x 2hrs per week of bespoke physiotherapy (we originally looked at booking one or two weeks, maybe), and with a bit left over in the fundraising pot covering another couple of Oakley’s ongoing physio sessions – at school and home – with Faye. https://www.iammephysio.co.uk/
The 1-1 course at Neurokinex has involved 3 days of 2hrs per week x 3 weeks and has been manageable. Through games Oakley has been worked hard, particularly further developing core strength and control, which then helps spine, hips, and functional movement, especially furthering independence. The gains made now are crucial, reduce likelihood or severity and impacts of future surgeries, and will have a positive effect long term as he retains these skills and can build on them.
Since the end of school term Oakley had 10 appointments not including physio sessions, even with Amy full-time carer trying to protect some time during August. Early in the school holidays we had a 3-week staycation break and visited some family, though Oakley went down with an awful cold which turned into a chest infection requiring round-the-clock care at home and GP and respiratory team support. Once he was passed that we had 5 days of fun which included getting in the sea and crazy golf!
Once again we are so grateful to fellow parents in Oakley’s year group and look forward to a new term starting and more learning and play together soon!
Best wishes,
Nick & Amy
If you would like to support Oakley’s ongoing physiotherapy need, please get in touch with Nick and/or Tree of Hope https://www.treeofhope.org.uk/support-for-parents
More about SMA type 1 and the Zolgensma therapy Oakley received https://www.zolgensma.com/about-sma
