When we were first told the extent of Ivan's disability I thought that we would suffer having to care for him but at least he would benefit from our care. Now as I look back I see that it was all the other way round. It was only him that ever really suffered and it was us — Sam, me, Nancy and Elwen — who gained more than I ever believed possible from having and loving such a wonderfully special and beautiful boy.
In a letter to activists after the death of his son (28 February 2009)