Oakley was born on 8th June 2021 and at age 3 months he was diagnosed with SMA Type1 (Spinal Muscular Atrophy), a rare genetic muscle wasting condition. He was immediately given the revolutionary gene therapy Zolgensma at 14 weeks age, and although it’s not a cure, it has transformed the course of his condition and given him a great chance at life – he will most likely always need specialist care but he is making great progress.
Oakley is named after the group of oak trees representing knowledge, resilience, and strength. He inspires us every day and we strive to support him and ensure we give him the best possible life he can have, now and in the future, whatever that future may look like.
Oakley receives specialist care from Bristol Children’s Hospital, where he first received his gene therapy treatment. He has a specialist muti-disciplinary team monitoring his progress, learning and problem solving and helping them to discover the best options for children with SMA. As Oakley’s parents and carers we are part of that team, which is sometimes extremely challenging but also inspiring.
Amy provides Oakley with full time care at home in these early years. This also means endless administration, medical and logistical, organising Oakley’s specialist medical and physio appointments and making continual decisions over the special orthotics, equipment at home and mobility equipment that Oakley needs. The choices are difficult and sometimes conflicting because the health teams are still learning from Oakley’s progress.
Regular specialist physio is one or the main ongoing therapies Oakley needs and the benefits are plain to see. He has sessions at home several times a week and he recently attended a 3-week intensive physio course at the amazing NAPA centre outside London.
We know that the quality of the physio treatment and orthotics which SMA children can get especially in the early years will determine how much strength and muscle movement they can go on to develop, whether or not they will require full time care and equipment to help them breathe and eat, or maybe multiple operations on their spine and hips. This will determine their future quality of life, the future costs to the NHS and their ability to contribute back to society over their lifetimes. It’s not just about being able to stand or walk. Walking does not define the quality of your life, it’s the things you or I might take for granted that do. Being able to sit up unaided, get onto a chair or wheelchair or toilet and support yourself safely, lift your fork to eat, brush your teeth, wash yourself, be able to play with toys. The simple things you or I don’t even think about.
We also receive wonderful specialist support at Charlton Farm, one of the three Children’s Hospices in the South West. We have weekends there when Oakley is looked after by the amazing staff and we can enjoy the excellent respite facilities.
Despite his condition Oakley has a really fun and warm personality, he is bright, communicative, loves life and gives us smiles, laughs and love every single day. He is making great progress thanks to all the incredible support he receives and we are confident he can go on to attain greater independence and give a lot back to society.
The time we both have to devote to Oakley’s care means that our income is limited and our costs are high, a financial double whammy. We are so grateful for all the incredible support we receive from family and friends, this is making a massive difference to Oakley’s life chances.
Thank you for all your help!
Nick and Amy xx