Fundraising for Oakley

Oakley has SMA type1 (Spinal Muscular Atrophy), a very raregenetic 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. My wife continues to provide this, which means endless administration, medical and logistical, as well as problem solving working with Oakley’s multidisciplinary team. It’s the hardest job there is which no parent should have to face.Oakley (named after the group of oak trees representing knowledge, resilience, and strength) inspires us 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. But it is impossible to overcome the various financial challenges we continue to face.

Our son receives specialist care and support at Charlton Farm, one of the three Children’s Hospices in the South West.  My wife and I would not be able to manage our son’s complex needs and life in general without the care and support they give to us, as well as the NHS multi-disciplinary team of specialists who work with Oakley.

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 we 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 we need much further support financially to help Oakley reach his ultimate ability.

Home Adaptations Project 

Now complete, this project created an accessible and extended home for Oakley, who was eligible for the maximum council grant towards this, with the rest provided by family. We needed to create a new bedroom and bathroom for him, and make all the ground floor accessible by widening doorways and providing level entrances and access inside and out. Also specialist medical items including bed and bath. The wheelchair accessible garden, funded by Nick's brother, is also a key feature with level access from the house and can be used all year round. 

Urgent Financial Needs

1 Funding for Oakley to take up a once in a lifetime opportunity on a NAPA* intensive physio 3 week course in September 2024

1) NAPA intensive physiotherapy course, London (3 weeks, Sep 2024)

Following application and lottery-style selection, Oakley has received the offer of a place on a NAPA intensive course. This is a once in a lifetime opportunity . https://napacentre.co.uk/about-us/NAPA are the world leaders in this type of physiotherapy and their practice/research is providing significant results for many children like Oakley. Some of the reasons why maximising physiotherapy intervention is so important is it will mean less other intervention later eg. surgeries. which cost the NHS more, mean lesser quality of life, time missed off school, lesser prospects, etc. Also of course the greater independence as a result of improved mobility and capabilities brings many important benefits.Cost £5,865£1k deposit now paid.Outstanding balance due 1 month ahead of the 3 week course - August 2024,not including accommodation costs.

2)a) Private physiotherapy at home c.£10k pa

Oakley receives 1-1 sessions with an NHS physio who is ace, however children like Oakley need regular physio to help them achieve goals we never thought could be possible. However, this is expensive as it is so specialist and research and optimal techniques are evolving live, These private physio sessions twice weekly with us are making a dramatic difference to Oakley’s daily development, and towards far greater independence.= £850 per month needed ongoing

2)b) Private physio additional intensive blocks c. £1500 perblock

We have managed to self-fund one block of daily physio for 5days which saw Oakley move on a lot further and faster- it was incredible to see him progress. We see the evidence of this at home and internationally for children doing multiple intensive blocks throughout the year, but we need to do more to see more gains. We wish to do at least 3 weeks per year at home like this.= £4500 p.a. ongoing

2)c) Orthotics

The NHS provide a basic level of orthotic care, but a lot of children like Oakley need much more specialist orthotic devices to support them, something the NHS are unable to provide due to funding and lack of resources. We hope that will change one day, but for now, it means we have to pay for these privately.

Having the right orthotics equipment at the right time is crucial; it’s vital he has the right support for his development and to minimise skeletal complications down the line. Without them, the impact on Oakley could be highly detrimental to his ability, something we work so hard on around the clock in physio. The combination of physio with the right equipment including orthotics is integral.

Oakley needs a modern dynamic spinal brace specifically moulded for him to protect his spine whilst sitting , We have gone ahead with https://www.spinecor.com/ £3150 

His current lower body limbs orthotic provision needs readjusting 1- 2 times a year and/or with replacementsOur Autumn & Winter 2023 bill 2023 is £1379It has also been recommended to us, (with principles and all examples of it aiding development in action) that Oakley wears a special compression / support suit. See https://progettiamoautonomia.it/flexa-garments/ and scroll down for research and case studies. c. £1000

Total needed urgently for Orthotics as of November 1st: £5529

Oakley will need replacement orthotics as he grows beyond the adjustable range and possibly for different needs as he develops over the next 12 months. We have used money raised to date for recent orthotics resizing and new ankle and foot orthotics, also September and October Physio.

3) Motability schemeWe need to plan for when Oakley turns three years old and we can make use of the Motability scheme for an adapted vehicle for his needs. The motability scheme is great because disabled people receive a monthly allowance from the government. Having a modern reliable vehicle is essential, but the size of an adapted vehicle does mean these vehicles are a lot more expensive. By having a wheelchair adapted vehicle, it will make things doable for either my wife or I to drive him around safely and to allow us to take any equipment he may need, be it at nursery, school, or anything else (eg. wheelchair, his stander, specialist buggy and other physiotherapy or occupational therapy equipment).

We will need:c.£12,000 needed by June 2024 for a deposit and adaptions to fund a people carrier /small van type vehicle before then taking on monthly payments towards the vehicle.

In total c.£50,000 listed by June 2024Why we 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 us 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. We celebrate Oakley's achievements every day and are amazed by how he keeps kicking SMA’s butt, continuing to further his capabilities all the time, for now.Thank you for reading and for helping us. What we can give Oakley now means the world to us and will make a tangible and immediate difference to his development and happiness not just now, but also in the future. These next few years are the most pivotal in terms of giving him the best opportunities for later in life and will most likely be our greatest needs financially.

Nick , Amy and 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, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives.  If in thosecircumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.