Robert and Margaret and their lovely children are in our thoughts as brave Nikky slipped away yesterday afternoon.
In 1997 the van Rooyens organised a wonderful day where we all got together to meet a Swedish Rett expert who had worked with Dr Hagberg who was one of the co-authors of the original papers on Rett.
Yvonne posted a photo from that day a little while ago on facebook.
Robert had been to Zjuska's memorial day on Saturday. Rett parents know how others are feeling at this very sad time