The experts were in the room
The families who make up the New Zealand Williams Syndrome Association met for their summer camp in Whanganui in January – and there was a lot to catch up on.
It was the first time the families had been able to get together in four years. They usually meet every second year, but the pandemic intervened.
It was just ‘the experts in the room’ this time. Usually, the association invites a local or overseas expert working or doing research with Williams syndrome, and this year that wasn’t possible.
“We are working with the experts in the room,” says New Zealand Williams Syndrome Association National Coordinator Christina Stilwell. “I always feel we have a lot of wisdom already.”
Christina says it has been hard trying to arrange a camp with COVID-19 in the mix. “This is our third attempt. It is four years since we last met. Because the ‘Williamses’ are so social it is actually quite a massive thing not to be able to meet.
“Because it has been such a long time, we really needed a time to catch up with each other. Our focus this time is just reconnecting and hearing each other’s stories,” she says.
Christina says most families with Williams syndrome share similar experiences. “They know the genetics; they know the health issues and they can talk about what it was like for them. It’s not an expert who can tell us this.”
Six newly diagnosed families joined in the fun. Around 120 adults and children – 27 with Williams syndrome – got together at Whanganui Collegiate School for a range of family activities, including the usual highlight – the talent quest ‘Williams Got Talent’.
Bob Hastie entertained the audience on the Collegiate’s drum kit after the talent quest organiser, music teacher Stu Green and others, assured the school of Bob’s skill on the drums – and the fact that he had already brought his own drumsticks. The drums were in good hands.
The camp was supported by the IHC Foundation.
Caption 1: Campers have a blast aboard the Tot Town Railway at Kowhai Park, Whanganui. Reagan Todd and Bob Hastie are in the foreground.
Caption 2: Bob Hastie was a winner with his skill on the drums.