ALLEGAN, Mich. (May 5, 2014) – The month of May marks Williams Syndrome Awareness Month. It’s a disease not too commonly talked about, and the Williams Syndrome Association says one in 10,000 people world-wide are born with it.
Chase VanLiere is one brave 5-year-old who sang a solo from the movie Frozen in front of Hillside Preschool during the spring concert; but this performance took more guts than you may think.
“He’s doing really good. When he first started preschool he was hardly even talking: he was signing and that was about it, he had little words but he kind of had his own language, we understood but other people wouldn’t,” said Autumn VanLiere, Chase’s mother.
When Chase was eight-weeks-old, doctors found a heart valve disease called Aortic Stenosis; shortly after Chase was diagnosed with Williams Syndrome (WS).
“At the time we hadn’t slept, all he did was cry: that’s part of it too, with Williams Syndrome they have high Calcium levels and so they have aches and things,” recalled VanLiere.
The Williams Syndrome Association says WS is a genetic birth condition that can affect anyone. Heart problems along with developmental and learning delays can be just as common as being very social.
“The cashiers at Meijer all know him by name because he’s such a flirt,” laughed VanLiere.
People who have Williams Syndrome also commonly have a strong connection with music.
“Happy birthday, we couldn’t sing happy birthday at his parties: he was four probably and we sang ‘Itsy Bitsy Spider’ because he would cry. I guess that’s a common thing for Williams kids. He has a very emotional connection with music,” said VanLiere.
Chase’s mother says he’s come a long way. For now Chase is on to learning his next song, and getting excited to head to kindergarten in the fall.
“He is just so social that he can fool anyone. He is not an average five-year-old, but if you just met him, you would not think that,” said VanLiere.
The Williams Syndrome Association is based in Troy, Michigan. The WSA also holds camps, called ‘Whispering Trails Camp,’ for people with WS ages six to 35. This summer 2014 the camp will be held in Grand Rapids starting July 13. For more information, and to connect with resources, see the WSA website.