A pub celebrating its 300th birthday is raising cash in honour of a Crowland teenager who suffers from a rare genetic disorder.
The Connor Wright Shwachman-Diamond Project has raised more than £76,000 in eight years for Great Ormond Street Hospital.
Now Crowland’s George and Angel staff and regulars are aiming to boost that total by holding special events from tomorrow (Friday) through to Sunday.
Great Ormond Street children’s hospital is leading research into Shwachman-Diamond Syndrome (SDS) and, as the result of money raised through Connor’s fund, it is able to diagnose new sufferers much earlier.
SDS is a rare and complex disease affecting multiple areas of the body, notably the pancreas, bone marrow and skeleton, as well as weakening the immune system and triggering anaemia and blood-clotting problems.
Connor (18) can be laid low for a month by a common cold.
He is now studying a college carpentry course at home.
Connor’s mum, Amanda, said: “He will only ever be able to work part-time but my mum and step-dad have their own shed and garden furniture business so he will be doing a couple of hours a day here and there.”
The family are battling on despite the latest news from the doctors revealing Connor’s bones are weakening.
Amanda said there’s no treatment other than Connor strengthening his bones himself through exercise such as biking.
She’s delighted the George and Angel is backing Connor’s fund because it will help other children with SDS.
Amanda said: “I am really pleased with what they are doing. I hope it’s a huge success. Because of the fund, a lot of children are getting diagnosed earlier. We have definitely raised awareness, which is really good, and the hospital has got the equipment to run the genetic test and get it through much quicker.”
Julie Norris, who manages the North Street pub with her partner, Graham Robinson, said the fundraiser was suggested by Connor’s dad, Paul, and they are delighted to be helping a good cause connected to a Crowland teenager.
Events include a pool competition starting at 7.30pm tomorrow with a first prize of a meal for two, a disco starting at 8.30pm on Saturday, a raffle with prizes donated by local businesses, and a special price of £10 for two Sunday roasts freshly cooked by pub chef Dionne Barnes. Former landlord Reg Boot returns to serve behind the bar on Saturday night.