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A Colchester butcher is taking part in Ride London Essex next month (May) to raise funds for a five-year-old Copford girl who has a condition which only three people in the UK have been diagnosed with.
Craig Formoy, 47, who owns and runs Willsher and Sons butchers in Marks Tey, hopes to raise around £3,000 by taking part in the race from London to Braintree and back on May 28.
Grace Beverton, 5, start having severe seizures in 2018 aged five and a half months. Following several frightening hospital admissions and a barrage of tests, she was finally diagnosed with a mutation of the gene RHOBTB2 (x.1448G>A) following consultation with a genetics specialist at Great Ormond Street Hospital.
Her family and supporters fundraise constantly to fund therapies and equipment which are not available on the NHS. Grace cannot walk or talk, and as there are so few cases like Grace’s it is difficult to know how she will develop.
The current aim is to find specialised and intensive physiotherapy sessions to help Grace sit unaided. Longer term goals might include milestones such as bearing weight on her legs or even standing and walking. There is also likely to be specialised equipment needed, as well as possible adaptations to the family home.
Craig, who forged a friendship with the family after frequenting the butcher’s shop said: ‘I’ve done a few long cycling events as fundraisers in the past, and doing this one for Grace is exactly what I need to get back into it. I want to help Grace and this is something I can do! My original goal was to raise £1,000 which I’ve already passed, so I’m now aiming for £3,000. I’m very grateful to everyone who is supporting me – it will make a huge difference to Grace and her family.’
Grace’s dad Dale, 34, a police officer, said: ‘I would like to say a massive thank you to Craig for taking on such a tough challenge for Grace. Not only is he one of Graces favourite people but Craig is also a great support to us as parents always being there for us at difficult times. The money raised will be used to make adaptation in our home for Grace meaning she is able to move freely through the house. Good luck Craig and we are all behind you cheering you on.’
Grace’s family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Grace with healthcare needs and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance.
Tree of Hope CEO Gill Gibb said: ‘We’re really pleased to hear that Grace’s family has so much support and wish Craig all the best with his challenge.’
To sponsor Craig or to donate to Grace’s fund, visit https://www.treeofhope.org.uk/grace-beverton or https://www.justgiving.com/fundraising/bikerideforgrace
