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We are not alone!

Article posted on 10 August 2009 Leave a Comment

We are not alone!

Families of children with myasthenia met together for the first MGA Children’s Weekend in Marlow on the first weekend in August 2009.

Eight families from across the country travelled to the two day event to share their stories and make new friends – as well as visit Legoland and Chessington World of Adventure thanks to the Merlin’s Magic Wand charity.

MGA chief executive, Alasdair Nimmo, came to the Saturday morning session to meet us and hear about our experiences as families living with myasthenic children.

All the families have experienced difficult times in getting initial diagnoses for our often seriously ill babies and young children. Many have had frightening emergency episodes and long stays in hospitals. All of us 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.

Apart from the children all having a wonderful time, 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 park 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.

As a group, we would like to thank the MGA for organising this weekend from the bottom of our hearts; it has meant so much to each and every one of us. We are no longer alone.

Click here to see more about our weekend.

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