Stal­wart for rare dis­or­der

Auckland City Harbour News - - NEWS - By JESS LEE

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.

Photo: JESS LEE

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.

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