My cousin Nick and his wife Amy’s son Oakley has SMA type1 (Spinal Muscular Atrophy), a very rare genetic muscle wasting condition. He received gene therapy at just 14 weeks and although it’s not a cure, we hope it will alter the course of his condition and give him a great chance at life. He will likely always need full time care.

Oakley (named after the group of oak trees representing knowledge, resilience, and strength) inspires Nick and Amy strive to support him and ensure they give him the best possible life he can have, now and in the future, whatever that future may look like. But it is impossible to overcome the various financial challenges they continue to face.

Oakley has a fun and warm personality, he is bright, communicative and clearly loves life and gives us smiles and love every single day.He is thriving thanks to the support he receives and they are confident he could go on to attain greater independence and give a lot back to society. However, that comes at a cost and for him to continue to thrive, it means they need much further support financially to help Oakley reach his ultimate ability

Why Nick and Amy need your support:

Parents are forced into one giving up work to become a full-time carer, or find a way to share care part time/part time work. And financial support for full time carers barely meets all the basic needs before even looking at household bills and further medical needs for one's child not covered by NHS.

There is huge mental and physical struggle for parents that have children with life limiting and extremely complex conditions like Oakley - It is relentless, demanding and extraordinarily isolating.

Any donation no matter how small will make a difference to them in order to help Oakley go on to reach his ultimate ability through regular and specialist physiotherapy.

SMA as a condition is rather unique now Zolgensma exists- what we do know is that so long as these children have extensive physio and the right orthotic equipment to support them, the difference is between them not needing full time care vs them needing 24 hour care, equipment to help them breath and eat, multiple operations on their spine and hips and not having a great quality of life. It’s not just about getting them 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 constitutes towards having a good quality of life. Being able to lift your fork to eat, being able to support yourself on a toilet chair safely or brush your teeth or even access a park to play or have the ability to play with toys. The simple things you or I don’t even think about. That’s the power of Oakley’s therapy and what it’s doing for him. It’s giving him opportunity.

So what are we going to be doing?

The Edale Skyline Challenge is a circular route in the Peak District that traditionally starts at the village of Edale. At Just over 20 miles long, the route includes 7 major summits that are Win Hill, Lose Hill, Hollins Cross, Mam Tor, Brown Knoll, Kinder Scout Low, and Grindslow Knoll. Myself and three friends aim to do the full walk on Saturday 21st September. We expect it to take around 9 hours. We are staying near by so the thought of a glass or two of wine and a delicious meal at the end will keep us going!

We thank you for any donation you can make