People started arriving on Friday afternoon and were greeted by Danny and Mike Grimes, who handed out name badges and lanyards. People said hello’s, checked in and many families met up on the patio area for a quick drink and catch up, before heading off to their rooms and getting ready for dinner. Dinner was served in the main restaurant; food was selected from a prepared menu. It was a good opportunity for families and friends to mingle and continue catching up. After dinner, people settled into the comfy chairs in the lounge area, and as is now traditional at the Sturge Weber weekends, we formed a big chatty circle, and spent the rest of the evening chatting with old friends, and welcoming new ones.
On Saturday morning, breakfast was a busy buffet with an extensive choice of food groups to choose from. The mobile creche was busy setting up and getting the activity club ready for the kids to be booked in at 9.30am. A few of the kids had already seen the gaming bus parked outside, so there was quite a buzz of excitement as we registered them and some of the boys were already discussing which games they wanted to play first. In addition to the gaming bus and the other activities, there was a visit from Marshall from Paw Patrol and a Grafitti artist that helped the children personalise hats and t-shirts.
After the kids went into the creche, the adults started with the first of our topics, which was Meet the Members, a discussion-based meeting where we met the Trustees, introduce our charity to new members and discuss anything that the charity wants to bring our attention to. Steve, our Digital Trustee talked us through changed to the website which now has an Easy Reader programme installed to help our visually impaired and dyslexic members to navigate the website more easily. The shop was also open to show off some of the new products that have been brought out this year.
After our buffet lunch, the children went back to the activity club, and the adults went into the AGM. After the official business was concluded, we started to discuss new types of fundraising for the charity, and recruitment of new Trustees, as we have new vacancies for 3 Trustee positions. At 4pm we concluded the discussions and collected the children for some down-time before the evening’s entertainment and dinner. This year, we were treated to a disco, games for the kids, a huge raffle and lots of dancing.
Sunday started with a big, busy breakfast buffet as the kids and young people were either going into the activity club or heading off on the coaches to Cadbury World for the day. The foyer was bustling with people and excitement as parents registered the children in with the creche and made last-minute checks that everyone had everything they needed for the day. The adult’s agenda for the day was less intense than yesterday, with guest speakers in the morning before lunch, and the afternoon allowed a little time for parents to relax or swim whilst the children were at Cadbury World.
The children that stayed in the creche on Sunday were treated to a visit from a petting zoo, that had an array of creatures that included; rabbits, gerbils, snakes and frogs.
Our first speaker was Catherine Swales, an Epilepsy Nurse Specialist at Great Ormond Street Children’s Hospital, who talked to us about FND – Functional Neurological Disorder.
Our second speaker was Christina Danai Eriva, a Third-Year trainee Psychologist from Great Ormond Street, who talked to us about a study she had been involved with regarding Sturge Weber in children and its relation to autism and learning difficulties.
Our third speaker was John Brookes, an Ophthalmic Consultant from Great Ormond Street, who talked to us about glaucoma in Sturge Weber, and the differing treatment and surgical options available.
All three speakers were very informative, friendly, and happy to answer questions. We really appreciated them donating their time (especially on a Bank Holiday weekend) and all the topics were relevant and gave an interesting perspective on how GOSH collate information to make treatments better for patients.
Catherine Swales – Epilepsy Nurse Specialist at GOSH
Christina Danai Eriva, a Third-Year trainee Psychologist
John Brookes, an Ophthalmic Consultant from GOSH
The children returned back to the hotel at 4pm, and the evening’s entertainment and dinner got underway from 6pm. Providing the entertainments this evening were a disco, who played games and organised dancing competitions for the younger members, and outside the main room we had a photographer set up with crazy, fun props for anyone who wanted to have their photos taken with friends and family. We had another raffle, and the hotly contested prizes in the auction this year included Star Trek reproduction models and a teddy bear.
Monday morning had a more subdued atmosphere as it was going-home day, and as well as being quite tired from a very busy weekend, it’s always sad to say goodbye to everyone. However, the nice thing is that we get to do it again next year, and most people are quite active on the Facebook members page, so we are quite good at keeping in touch with each other. We can’t wait to catch up with everyone again soon!
