By Rebecca Hannant
Having seen an online video showing the plight of a young girl named Storey Thompson, Patrington resident Mark “Jeff” Green set about mobilising patrons of his local pub, the Hildyard Arms, to raise money for Epilepsy Research UK.
With the wheels set in motion, the community rallied to deliver a memorable family fun day that was well attended by Patrington residents and supporters.
Storey’s mother Lucy said her daughter had been born with global development delay and suffers from seizures.
She added: “She didn’t reach milestones, physically, verbally or mentally, and she also has hypotonia, which means she has muscle weakness, and that’s why we were told she might not walk. But she proved everyone wrong.
“We’re waiting on results from a full genetic sequencing test to see if they can find out which gene it is that is missing or damaged, but other than that they don’t know why she has so many additional needs. She is still non-verbal but can understand some small sentences now. Her epilepsy then started when she was two.”
The fun day began with Storey arriving on a pony accompanied by Spiderman on his own trusty steed. On a very hot day all the event organisers dressed up, to the delight of the children.
Throughout the day there was plenty to do including tombolas, cake sales, stocks and a raffle, helping to raise a total of £2,121 for Epilepsy Research UK.
Live music was provided by the local family band Bonemuel, and during their set they invited Lucy to join them on stage to sing some classic hits. The performance was followed by a karaoke disco that showcased the vocal talents of participants young and old.
Lucy said: “Rob and I are overwhelmed with how amazing it was. So many people took Storey into their hearts and even though they’ve only known her a short while, they have done so much for her.
“Sadly, Storey has had seizures every day since the party, and it is a painful reminder of just why the day was so important. The amount raised will help so many people that suffer and will hopefully get a cure for Storey too.”
Hildyard Arms manager Lisa Webster, her team and customers have vowed to continue their efforts to support the cause and they are already planning further fundraising events.
