Stalwart for rare disorder
A CHEEKY, determined young man prompted Kit Crawford to stand up for change.
But Gordon Crawford isn’t around to see his mother honoured for raising awareness of the rare disorder that cut his life short.
Kit Crawford has been awarded The Queen’s Service Medal for services to people with Williams syndrome.
The rare genetic disorder affects about one in 10,000 people worldwide.
It is characterised by medical problems including heart issues, developmental delays and learning disabilities, alongside highly social personalities and an affinity for music.
Crawford has devoted 32 years of her life to raising awareness and supporting those affected by the disorder.
Crawford, who lives in the Auckland suburb of Pt Chevalier, had never even heard of the term Williams syndrome until her son was 20.
She picked up on it after joining a support group for parents of children with hypercalcaemia, a common issue for those with the syn- drome. The group eventually disbanded, prompting her to establish the New Zealand Williams Syndrome Association in 1989.
It started with just 15 members but now hundreds of families turn to the group for support.
Crawford says things have come a long way in terms of diagnosis and awareness since the 1960s.
‘‘One family I knew had a hell of a time. They were told to put their daughter in a home and forget they ever had her. It was awful.’’
Crawford and her husband ended up home schooling their son because they felt he wasn’t getting the support he needed.
‘‘He used to use language beautifully and with a deadpan expression he would crack a joke but he once asked me why he found it so difficult to keep up with the other children,’’ she says.
‘‘He was longing to read and he was not being taught because we were told reading had to go hand in hand with writing and he wasn’t able to write.’’
Her son was an integral part of their family, Crawford says. He was just 45 when he died of a heart attack.
Crawford says her work to raise awareness of the condition could not have been done without others’ help.
‘‘I’m just so amazed and that anyone would ever give me an award – you could have knocked me over with a feather when I found out,’’ she said.
Kit Crawford has been awarded The Queen’s Service Medal in this year’s Queen’s Birthday Honours for her work raising awareness of the rare Williams syndrome.