The NHS has limited time provision, beyond the first 3 months for children like Oakley. As a result, all families with children like ours feel they have to enlist specialist private physiotherapists. Oakely’s physio (in combination with many other provisions) is making a huge difference to developing his muscle strength and mobility and it is crucial that we maximise his progress in advance of him starting school later in 2025. Maximising his gains through physio while he is young will also help to minimise interventions later on in life e.g. surgery on spine and hips, which would mean lesser quality of life, time missed off school, reduced prospects, etc. and cost the NHS more in the long term.
Physio At Home
Oakley has private physio sessions at home usually twice a a week which is proving hugely beneficial. This is costly, approx. £750 a month as it is so specialist and research and optimal techniques are constantly evolving. These sessions are making a dramatic difference to Oakley’s strength and mobility and towards far greater independence. We can literally see the increases in what Oakley can do month on month change depending on how much physio we fit in or can afford. We have also arranged additional intensive physio blocks of 5 days at a time which move him on further and faster. There is evidence in the UK and internationally of the benefits when children attend multiple intensive blocks through the year.
Expected cost in 2025 approx £8k
NAPA – Intensive Physio Course September 2024 & Planned For April 2025
Following application and lottery-style selection, Oakley took up a place on a NAPA intensive course in London in September 2024. NAPA are the world leaders in this type of physiotherapy and their practice/research is providing significant results for many children like Oakley. This course was hugely successful, we could see Oakley strengthening by the day! It was costly, £5,865 plus accommodation. This was funded through through a mix of fundraising and family help. The NAPA course was so hugely beneficial and we have been very lucky to have secured a place for Oakley on another course in April 2025. This will help to maximise Oakley’s strength and mobility in advance of starting school later in the year.
Expected cost of NAPA in 2025 approx £8,000 in total (£5,640 course plus Airbnb accommodation £2,500).
Thank you for all your help!
Please see the blog for all the updates on fundraising activities.