The following article was written by a parent of two of the youngsters who attended our 2009 Family Weekend.
We managed to get places on the RSA Scleroderma Family Weekend at very late notice having only just joined the Association. We arrived at the Westminster Hotel in Chester and were very pleasantly surprised at how homely the hotel seemed (and so close to the station!). We soon settled into our room, and made our way down to meet other families. We were greeted by Anne and made to feel very welcome. After an initial welcoming drink at the bar, we made our way in for the meet and greet evening meal, which was a very enjoyable buffet. The children immediately determined the format of the weekend, and sloped off to sit at one large table together, leaving the grown-ups to mingle and get to know each other, and for some, to re-acquaint.
The evening was very relaxing and we played a few quizzes. The children made their own team and we all had a very enjoyable time, with banter flowing from team to team. Soon, we all retired, and rose early to a full English breakfast to start Saturday. The children’s morning activity was structured and interesting. An Occupational Therapist played theraputty games with them, and they bounced energetically on space-hoppers and balance aids. Fun was had by one and all. As for us, we were treated to a morning talk from a genetic researcher who delved into all aspects of research relating to scleroderma. It was immensely interesting and we enjoyed a lengthy Question and Answer session at the end. After a morning coffee break, we met the doctors from the Alder Hey team, who gave us a thorough and informative talk on scleroderma, from cause to diagnosis and treatment. Again, we had ample opportunity to ask questions and we all thoroughly appreciated their input and knowledgeable answers to our many questions. The children were treated to a visit from Elizabeth Allen, from the British Skin Foundation, who inflicted some horrific injuries on the children, all in the name of theatrical makeup. Blood and gore spilled from their arms and hands, with glass imbedded in their wounds, and the Hotel Manager was briefly convinced that it was real!
Pictured left: the children enjoy theraputty games
Pictured right: the
Alder Hey Team
Lunch followed, and hearty appetites were again met substantially. Thankfully Anne had arranged an afternoon’s activity which involved getting out and about in Chester on the City Tour Guide bus. I don’t know about anyone else, but after three meals in the hotel at this stage I was ready to walk off some of the calories I had already consumed! We had the rest of the afternoon to explore the beautiful city of Chester and thankfully the weather was kind to us and we enjoyed a dry and pleasant afternoon. We returned to the hotel in the late afternoon and got ready for the evening meal – or “party night” as the kids had started calling it. Once more we enjoyed a hearty meal thanks to the wonderful hotel staff, who couldn’t have been more welcoming and accommodating. Plans for the evening entertainment were somewhat curtailed due to the X-Factor and Strictly Come Dancing, taking preference over games!
Sunday morning was quite a rush, as families had trains to catch or long drives ahead of them. It was sad to say our goodbyes, and hugs and kisses were exchanged all round. Contact details were swapped and firm friendships formed by the children and parents alike. Everyone agreed that we had all benefited from and enjoyed the weekend enormously, had a great deal of fun and would be going home with some very happy memories, having made some new special friends.
Lorna Speer (Parent)