Specsavers Cheltenham has been a buzz with activity as part of a fundraising week for the charity Joseph’s Goal.
Bee A Star Week
The store held what it called Bee A Star Week to help raise funds for research and awareness about non-ketotic hyperglycinemia (NKH), a very rare life-limiting genetic disorder. The activity was prompted by a local family’s fight against the disease after their son Arthur was born in March with the condition.
The bee is used by Arthur’s family as part of their own fundraising effort for Joseph’s Goal, so the store thought it would be a good idea to incorporate into the theme of the week. Staff donned their finest black and yellow gear and sold bee-themed cakes, while younger customers were able to get involved with the fundraising with a ‘pin the wings on the bee’ game.
Yellow goody bags were also on offer throughout the day in exchange for a £1 donation.
‘It was the first week of the school holidays so we wanted to do something fun in store that was also going to raise money,’ said store director, Melanie Brackstone. ‘NKH is such a serious condition that there is currently no cure for and once we heard about Arthur, we were really keen to help. Thank you to everyone that came down and supported us on the day.’
NKH is a rare genetic disorder that affects one child in every 76,000 born. Children with this condition have a problem breaking down the amino acid glycine. This is caused by a defect in the enzyme system, resulting in an accumulation of glycine in the body’s tissues and fluids.
The mortality rate for children born with this condition is high and many die before they make it out of toddlerhood. Those that survive are often extremely disabled both mentally and physically with uncontrollable seizures.