Music will help spread the word about genetic disorder
It wasn’t until she was about 6 months old that doctors finally attributed Isabelle Oesterling’s symptoms to a genetic disorder, but her mother had never heard of the disease prior to the diagnosis.
Isabelle’s mother, Abigail Wilson, said her daughter was diagnosed with Williams syndrome, which is a developmental disorder that affects much of the body including the heart and cardiovascular system.
“When she was diagnosed that was the first I heard of it,” Wilson said. “They kept throwing out ideas of what they thought she might have; Williams syndrome was never mentioned because it is rare, so it’s not what they look for.”
Despite Isabelle’s diagnosis, Wilson said the 1-year-old is a “very happy baby,” particularly when she hears music.
As a way to raise money and awareness for Williams syndrome, Wilson and Evans City resident Everett Foster have organized a concert event for Aug. 27 at Butler Memorial Park, which will feature several bands and information about the genetic disorder.
Foster, who performs with a few bands featured in the DirtyRamen Skate Shop Williams syndrome Bash, said the idea came from Isabelle herself.
“A lot of the children diagnosed with Williams syndrome have a tendency to really succeed in music,” Foster said. “So that started the cool idea to have a concert in honor of Williams syndrome.”
Foster said many bands jumped on the opportunity to play at the event after he posted a request for performers on social media. His place of work, the DirtyRamen Skate Shop in Butler, also signed on as the main sponsor of the event.
There are 10 bands scheduled to perform at the event, including local hard rock acts Anxiety at Best and Bombcat and Pittsburgh acts like Chip & the Charge Ups.
The fact that not many of the musicians had heard of Williams syndrome didn’t dissuade anyone from performing, Foster said, and some were even happy to learn about the rare disorder.
“There is so much more to be discovered about Williams syndrome, and any help we can do to fund some money for them,” Foster said, “as long as it's something to help as long as it figures out closer as to what it actually is.”
Wilson said that she has learned a lot about Williams syndrome in just a few months, thanks to a clinic in Columbus, Ohio, which has helped her find other parents of children diagnosed with the disorder. She said the disorder is diagnosed in one in 10,000 births a year, worldwide, but there is still much to learn about how it affects people.
“It can affect all organs and areas of the body, but most frequently it’s in the heart and the valves,” Wilson said. “There's vision problems and auditory processing problems as well as intellectual disability. With how young my daughter is, it's hard to know how it's affecting her.”
Foster said Butler officials were also supportive of the fundraiser, and waived the fee for the group to rent out Butler Memorial Park for the day. He said the waived fee allowed the organizers to also make entry to the event free, so more at-will donations can be collected from attendees.
Foster said he is excited to get the word out about Williams syndrome through music, because patients like Isabelle have been found to benefit from music when researched.
“She loves music,” Foster said. “I listen to metal music in the morning and Isabelle’s foot will be tapping to the beat.”
The band bash kicks off at 10 a.m., and will finish up at 9 p.m. Aug. 27 at Butler Memorial Park, with bands playing under the Rotary Shelter. For more information, visit the event’s Facebook page.
If You’re Going
What: William syndrome band bash
When: Bands start at 10 a.m., and will finish up at 9 p.m. Sunday, Aug. 27.
Where: Butler Memorial Park, with bands playing under the Rotary Shelter.
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