Supporting people with Cri du Chat Syndrome and their families

Southeast CDC Meetup

by Amanda Smith on 24 October 2013

On Saturday 19th October, 10 families spanning 7 counties met up in Horsham for the first meet up in this area. Half the families were support group regulars, while the other half had never been to a meet up like this before. Here is what we got up to…

Enjoying the playground

We started out at Springboard House in Horsham. All was quiet until everyone started to arrive, and gradually the place came alive with the happy sound of children playing and having fun, parents busily chatting away over cups of tea and copious amount of cake, and before we knew it, we couldn’t see the floor for toys and dressing up clothes. Some children enjoyed chilling in the sensory room, while others ran riot in the soft play area or outside in the garden.

Luckily James had suggested name labels, which at first I thought was a bit naff, but I actually found it very useful so that I didn’t have to keep asking everyone’s name!

While the children played, the parents chatted and shared their experiences on topics like diagnosis, schooling, toilet training, respite & support, benefits, siblings and, of course, cake.

We then all went on to a pub for a buffet dinner, where the food was rather scrummy but our daughter Amelia, being far too excited, mainly ate cake for dinner, while Jessica (our 11 month old) ate everything in sight.

It was so lovely to see all the children playing together and enjoying themselves in a safe environment, and the parents being able to relax and not have to explain their child’s behaviour.

Many thanks goes to the CDCS support group for funding this event. These gatherings are rare but provide invaluable opportunities for support and socialisation of our wonderful children.

We really hope the experience will encourage those new families to join up to the support group and come along to the next national family weekend, and hopefully we can plan another regional meet up too.

You can see the full set of photos taken on the day on our Facebook group if you’re a member!