Hannah's family weekend

Roald Dahl's Marvellous Childrens Charity

4 year old girl called Hannah

"The weekend really helped us to see Hannah as Hannah again, and to celebrate everything that she is." Hannah's mum Beth.

Hannah has Rett Syndrome, which is a progressive and currently incurable neurological condition. Like most children with the condition, Hannah started growing up without any problems.

But then her development started to slow. Her mother Beth was told that Hannah was likely to develop profound multiple physical and learning disabilities.

It was a very uncertain and worrying time for Hannah and her family. Beth said "We didn't know what to expect and we feared we would be overwhelmed by being confronted with the possibilities for Hannah's future."

Roald Dahl's Marvellous Children's Charity ensured that Hannah and her family could go on a special weekend for families living with Rett Syndrome, organised by Rett UK.

Hannah really enjoyed the weekend; she loved the attention from the volunteers and made daily use of the swimming pool. She is a very social child and thrives upon meeting new people and making friends.

Beth admits that the weekend opened up her eyes to some of the difficult scenarios which her family may one day face. Yet the weekend also helped them to realise how important is was to celebrate and enjoy the present with Hannah.

She said "I can honestly say that we spent the weekend feeling mostly very lucky and happy. We left in a far more positive frame of mind than we could ever have anticipated. I think that when you deal with medical side of things, you can lose sight of the little girl beneath it all, and all of the things she can do."