Struthers 8-year-old raises awareness about life with Williams Syndrome


affects 8-year-old struthers girl

By Sarah Lehr

slehr@vindy.com

STRUTHERS

When 8-year-old Emily Guerriero goes to the grocery store, she greets every person she sees.

Emily, a second-grader at Struthers Elementary School, has Williams syndrome, a rare genetic condition.

Individuals with Williams syndrome are highly sociable and emotionally expressive.

Like many people with the syndrome, Emily adores music. She loves to dance, especially to “Sorry” by Justin Bieber.

The condition, which is equally present in both males and females, occurs in only one in 10,000 people worldwide.

Emily’s parents learned their daughter had Williams syndrome when she was 18 months old. Emily’s doctor had noticed a heart murmur. Cardiovascular problems often accompany Williams syndrome.

When Emily’s mother, Karen, first heard the term “Williams syndrome,” she had no idea what it was.

“I go into panic mode because you immediately think the worst,” Karen remembered. “You think of every horrible possible thing that you’ve ever heard in your life.”

Since her daughter’s diagnosis, Karen has filled binders with research into the developmental disorder.

People with Williams syndrome are usually small in stature with certain facial features, including small, upturned noses and full lips. Many have light eyes with a distinctive starburst pattern on the iris. Emily’s eyes are brown, but she has the curly hair that distinguishes many with Williams syndrome.

Developmental delays and learning difficulties occur along with syndrome. Some people with the syndrome use wheelchairs because of low bone density. As a result of these challenges, Emily sees an array of therapists and specialists.

Because the condition is so rare, it is a struggle to obtain insurance coverage.

After Emily’s diagnosis, Karen, who formerly worked as a corrections officer, stayed home full time to care for Emily and her 9-year-old sister, Elizabeth. Karen’s goal is to one day become an advocate for other parents of children with Williams syndrome. She hopes to help them get the services they need from schools and insurance companies.

Karen credits her family for supporting her throughout a litany of medical appointments. Emily’s grandmother has only missed one doctor’s appointment in eight years, Karen said.

Each year, the large extended family descends on a walk for Williams syndrome awareness.

“When we go, we invade,” Karen said.

Since May is Williams Syndrome Awareness month, Karen is sponsoring a free community event Saturday in Emily’s honor. The event will take place from noon to 4 p.m. at Struthers Parkside Church, 110 Poland Ave.

Karen wants Emily’s peers to have the opportunity to ask questions about Williams syndrome. Along with face-painting and crafts, attendees will be able to partake in Emily’s favorite activity – dancing. Proceeds from an auction and raffle will benefit the Williams Syndrome Association.

Karen appreciates the opportunity to talk with other families affected by the syndrome. They marvel at how their children share oddly specific proclivities. For instance, the kids develop a fascination with the strobe lights outside Halloween stores. People with Williams syndrome tend to seek out sensory stimulation, even though they fear being startled.

Like others with the disorder, Emily is nurturing. She likes to cuddle with her dog, Triangle, and becomes distressed when she hears a baby crying.

Certain songs make her either very happy or very upset. It seems the music triggers deep-seated emotional memories, though Emily has trouble articulating why.

Because Emily does not fear strangers, Karen worries about letting her play alone in the front yard.

Despite such complications, Karen believes the general population would benefit from being less judgmental and more emotionally open, like Emily.

“I can’t imagine not having this in our life,” Karen said. “I get kisses and ‘I-love-you’s.’ I get hugs all the time. I get snuggles all the time. It’s real, and you know it’s real. When people meet her and she’s excited to see you, it’s real.”

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