Campaign byTree of Hope(RCN 1149254 (England & Wales), SC042611 (Scotland))
Fundraising for Therapies & Equipment
Story
I WAS swimming the Great East Swim, 2 mile event (open water) on 25 September but due to the event having been cancelled 3 times this has been changed to a measured swim at Dedham River on 25 September.
This is for Colchester's brave little lioness, Grace Beverton
After COVID cancellations, lack of training and rescheduling of the swim I am now going to do this at Dedham River with a team of open water swimmers cheering me on and anyone else who wants to come along.
This will be my longest open water event - I did the Midmar Mile (world's biggest open water event in South Africa) just before Lockdown 1 and did the Aspire Channel Swim at the end of 2019.
Now I'm taking on this challenge to fundraise for essential equipment and treatment for Grace. Grace was diagnosed with a very rare gene mutation (RHOBTB2) in 2018 at 5.5 months old. This gene has only recently been linked to epilepsy and Grace is currently only one of around 21 people diagnosed around the world, possibly only the 3rd within the UK.
Much of the treatment that Grace needs is not available on the NHS so needs a lot of very specialist treatment. The Beverton's first milestone that they are aiming to reach with the fundraising is to provide Grace with more specialist and intensive physiotherapy sessions to help her try and sit unaided. A small step for many, but for Grace this has been more of a challenge. And their long term goals include to continue to provide physiotherapy to help Grace reach further milestones such as weight bearing on her legs, standing and walking.
They also hope to be able to provide her any specialist equipment or aids to enhance her home enviroment, and any adaptations to her home environment that may be required as Grace grows older.
Please visit Grace’s Facebook page, “Hope For Grace” (https://www.facebook.com/HopeForGraceBeverton) for regular updates of her progress, adventures and highs and lows of living with RHOBTB2.
Thank you so much for reading this - Grace's full story can be found here: https://www.treeofhope.org.uk/grace-beverton/
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 their core operating costs.
If they raise insufficient or surplus funds, then the funds will be used, if appropriate, to fund support for their child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances 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
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