Crowne Plaza Marlow, Legoland and Chessington World of Adventures!
The families meet with MGA chief executive, Alasdair Nimmo (centre, back) at the hotel on the first morning.
Lively workshop sessions on that first morning, led by the MGA’s Rita Goldthorp (below), heard some of the struggles, hopes and fears parents faced in getting initial diagnoses for their children.
Proactive management of a child’s health is essential for myasthenic children, and parents talked about the challenges they faced.
Parents were united in the need to create a means to keep in touch with each other - and be able to support each other, and share information about the condition, their children’s treatment, education and provision in all aspects of life.
Many have had frightening emergency episodes and long stays in hospitals. All agreed that it had been a lonely path at times but that meeting other families in the same situation was enormously beneficial; as a group we can support each other and our children.
The defining characteristic of the weekend was talk. People talked in the workshops, over breakfast, at lunch, at dinner, in the swimming pool, at the theme parks and in the bar. There was just so much to say: so much knowledge to share, information to exchange and help on offer - from accessing the right health specialists and support through to adapting homes to suit children’s needs and battling with education authorities for the right support for our children to access their education.
Both Saturday and Sunday mornings were spent in workshops discussions and planning the foundations of a parent support network.
The afternoons, however, were free to visit nearby Legoland and Chessington World of Adventures, courtesy of Merlin’s Magic Wand - a charity run by theme park owners, Merlin Entertainments.
All the children had a fantastic time. And all the parents were very impressed with how both theme parks catered for disabled guests – not just in terms of disabled facilities, but also staff attitudes. The visits were a great success all round.
What the parents thought...
“This weekend has been a wonderful opportunity to meet other parents who really can relate to the experiences I have had as a parent of a myasthenic child. It’s been fun, informative and extremely helpful.” R Collins, Berkshire
“The weekend has been of great help for both me as a parent and for my children to meet others with myasthenia. The children have benefited from seeing that they are not alone.” G Thompson, Northampton
“We are not alone! Meeting other parents and children with myasthenia has been wonderful. We have so much to learn from each other and stories to share. The weekend was too short.” H Bedford, West Sussex
“The best people to talk to are other parents.” K Webster, Cardiff
“This weekend has provided an excellent opportunity for me and my children to meet others in a similar situation. It’s a starting point, but there is so much more to talk about, share and learn. Thank you (MGA) for making it happen.” A Miles, SE London
“This weekend meant a lot to me and my family. Toby was one of the young ones and it was great to see older children and teens with myasthenia, as we now know that Toby will lead a normal as can be life. We got a lot of strength out of meeting other families. Just talking about myasthenia you knew that they were listening and understanding the difficult times we have all had. We need to keep this small but happy group together so that the children/teens/families do not feel alone – as many of us did. Thank you for a fab weekend!” The Jones, Leicester
“Finally, somebody that we share a common bond with; somewhere we fitted in! It was a very necessary and worthwhile break. One that we have drawn knowledge and understanding from as parents. Aidan was also able to draw friendships that he will remember, as they have similar needs. He now knows that he is not alone! We need that connection through the forum. We met a lot of really thoughtful, caring beautiful people. We will treasure those moments. Thank you from the bottom of our hearts.” The Halls, Liverpool
And the children...
“I enjoyed this weekend because it was fun and I made two new friends.” Adam, 8
“I thought it was good and fun. The pool was the best!”
Hayden, 13
“The best thing about this weekend was meeting up with everybody, learning how similar our lives are, talking to people about our condition and talking to people who we have only ever heard about.” Jimmy, 13
“It was fun going to Legoland and I’m excited about going to Chessington!!!” Emily, 8
“It was very good!” Glen, 11
“I thought the children’s weekend was a good idea as it enabled us to meet other children with myasthenia.” Lee, 14
All in all, a weekend that none of us will forget - and planning and fundraising for 2010's Children's Weekend has already started.
