Story
Support Oakley with fighting SMA through vital Therapy
Meet Oakley — a brave, joyful little boy with an infectious personality and incredible strength in the face of Spinal Muscular Atrophy (SMA) Type 1.
SMA is a rare and life-limiting genetic condition that leads to progressive muscle weakness. At just 14 weeks old, Oakley became one of the first babies in the UK to receive gene therapy (Zolgensma). It’s not a cure, but it has changed the course of his condition and given us hope. However, motor neurons lost before treatment cannot be replaced — so maintaining his mobility and building muscle strength is vital.
What was once a question of “how long we would have him for” is now a journey towards making the impossible, possible.
Life with SMA
Oakley will likely need full-time care for the rest of his life. His mum, Amy, provides that care — a demanding and essential role that involves coordinating a full medical and therapy team, while managing his daily needs and progress.
Oakley continues to make wonderful strides thanks to these efforts, but ongoing therapy is crucial to protect his mobility, independence, and quality of life.
You can read more about Oakley’s story and SMA on his website:
About children living with SMA- https://smauk.org.uk/living-with-sma/children-0-12-years/health-wellbeing/
The ‘Move Your Way, for SMA’ Campaign:
We’re raising funds for Oakley’s next intensive physiotherapy course at Neurokinex in Bristol. Intensive physio has shown incredible results for him so far. These sessions help Oakley do the things most of us take for granted — like eating, dressing, or playing. These all become huge challenges for Oakley without proper care and support. But with the right therapies, Oakley will continue to break boundaries and live his life to the fullest.
To celebrate movement — something Oakley must fight hard every day to achieve — we’re inviting you to “Move Your Way, for SMA.”
From walking, scooting, swimming, cycling, or dancing, to climbing the local park frames or bouncing on a trampoline — every movement counts! Get creative, set yourself an activity goal, and join in to raise awareness and funds!
We’ll all come together for a ‘summer weather get-together’ in June to share photos and videos, celebrate your efforts, and reflect on what movement really means.
Why Your Support Matters
Caring for a child with SMA is a 24/7 commitment — physically, emotionally, and financially. Every donation, big or small, directly supports Oakley’s therapy. With the right interventions now, we can help Oakley avoid more invasive treatments later, improving his mobility and overall well-being and help him fight against his muscles deteriorating as he grows.
Zolgensma has given Oakley a fighting chance — but it’s physiotherapy that gives him progress.
With your support, Oakley can continue to defy the odds and reach new milestones every day.
Thank you for your support. We’re so incredibly grateful for every donation and for being part of Oakley’s journey.
With love,
Nick, Amy & Oakley
7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.
If we raise insufficient funds, or surplus funds, they will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child, any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.