Walk for Williams Syndrome to raise money, awareness for birth defect

DAVISON — Bailey Stack, 13, waited patiently by the window watching for her friend, Egan Fowler, 14. The two hadn’t seen one another in almost a year.

“There’s Egan!” Bailey exclaimed, finally, as the boy exited a car. Unable to contain her happiness Bailey ran and threw her arms around Egan, giving him a big hug.

For the two friends it was like no time at all has passed since they met while working on last year’s inaugural Walk for Williams Syndrome Awareness in Davison.

Both Bailey, a student at Goodrich Middle School, and Egan, who attends Hahn Intermediate School in Davison, have the genetic condition characterized by medical problems, including cardiovascular disease, developmental delays and learning disabilities.

These symptoms occur side-by-side with striking verbal abilities, highly social personalities and an affinity for music.

For Bailey, the “highly social personality” is very evident in the way she quickly makes friends or reconnects with old friends like Egan.

“I’ve become popular at school,” she said. “People always stop me in the hallways and ask me if I want to do something with them.”

Bailey and Egan are both hoping they can get support from the community to raise awareness about their condition through the second annual walk being held at Hahn Intermediate School on May 7. Registration for the event is at 10 a.m. with the walk taking place on the track at Collins Field by Hahn at 11 a.m.

Walkers are asked to collect donations of at least $25 or pay a registration fee of $25 to take part in the event. Proceeds will go to enrich the lives of individuals and families affected by Williams Syndrome.

WS affects about one in 10,000 people worldwide — an estimated 20,000 to 30,000 people in the United States — though Egan’s mother Tracey Fowler said she’s heard it might be as high as one in 5,000 children.

Having a child who suffers from a condition like WS has been challenging, said Fowler. Egan has had both heart surgery and the reconstruction of his skull when he was just an infant and has had special needs throughout his childhood.

But, she said, the Davison community has always reached out and supported Egan and her family. He was allowed to march with the DHS Marching Band last year during homecoming and she said there are few place he can go in town without someone recognizing him and waving hello.

“During the Homecoming Parade people were passing out candy and kids were running to get it,” said Fowler. “When the junior football players saw Egan could run and keep up like the other kids they brought him piles of candy. The kids got it — they understood.”

Bailey’s grandmother, Kathy Wilhite, said Bailey has also had her share of medical issues, having already had one open heart surgery and problems with her kidneys. Narrowing of her arteries is another problem she has been dealing with.

Most young children with Williams syndrome are described as having similar facial features. These features include a small upturned nose, long philtrum (upper lip length), wide mouth, full lips, small chin, and puffiness around the eyes. Blue and green-eyed children with Williams syndrome can have a prominent “starburst” or white lacy pattern on their iris. Facial features become more apparent with age.

Heart and blood vessel problems are also a symptom of the condition. The majority of individuals with Williams syndrome have some type of heart or blood vessel problem. Typically, there is narrowing in the aorta (producing supravalvular aortic stenos is SVAS), or narrowing in the pulmonary arteries.

Other symptoms include: elevated calcium levels, low birth-weight/slow weight gain, feeding problems, irritability (colic during infancy), dental abnormalities, kidney abnormalities, hernias, hyperacusis (sensitive hearing), musculoskeletal problems, developmental delay and learning disabilities. Both Bailey and Egan have managed to thrive in school.

Bailey is part of Girl Scouting and she’s in the Goodrich Middle School Choir (which recently took first place in state competition). Egan is involved in programs through his school and he’s learning to play the drums at the Flint Rock Star Academy.

The two friends said they are looking forward to this year’s walk, which will also feature the local fire department, a magic show and music provided by a DJ. They are hoping other children with WS will also be in attendance, giving them all an opportunity to get to know each other and share their similar stories.

“I have a lot of friends at school and I’m always doing something,” said Bailey, putting her arm around Egan. “But it’s nice to have someone else to talk to.”

Details: Call 810-214-1661 or register at www.walk4williams.org.

Leave a Reply

Your email address will not be published. Required fields are marked *