A Colchester dad is taking on a ‘Bushtucker Trial’ next month to raise funds for a for therapies and equipment for a friend’s five-year-old daughter with a rare genetic condition.
Jay Bremner, 32, who works as a self-employed safety netter, will be taking on the challenge at The Grapes pub on September 2.
Grace Beverton, 5, from Copford, Colchester, started 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.
Jay said: ‘I know Grace’s parents Dale and Gemma from our local pub The Alma and over the years I’ve taken part in a lot of fundraising activities for her – going to ‘Glitz ad Glamour’ evenings and I used to take part in the charity football matches.’
‘However, I can’t do that any more in case I get injured which would mean I can’t work, so I wanted to do something else to help. I have a reputation of being happy to eat absolutely anything so I thought this challenge would suit me.’
‘The pub staff is keeping quiet exactly what we’re going to be eating but I’m imagining things like innards and eyeballs. I’m not too worried about that, but if we also get into handling bugs or similar that might be more tricky.’
Grace’s family and supporters fundraise constantly to fund therapies and equipment which are not available on the NHS – to date, they have raised almost £60,000. 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 fund 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.
Grace’s Dad Dale, 34, a police officer said: ‘Grace and all the family are so grateful to Jay for doing his upcoming bush-tucker trial. Jay and his family have been supporting Grace for a very long time and we know they do so much for us and Grace. We feel so lucky to have them in Grace’s ‘pride’ – she is known as our little lioness as she is such a fighter. Also a massive thank you to the Grapes Pub for hosting this incredible and unique event.’
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 ongoing support from their friends, family and community and wish Jay all the best with his unusual challenge!’
To sponsor Jay or to donate to Grace’s fund, visit https://www.treeofhope.org.uk/grace-beverton or https://www.justgiving.com/fundraising/jaystrial
