SCOBEL WIGGINS/Gazette-Times Sophie Gerding, 4, points out boats from a picture book with her parents Heather and Nate. Born with Williams syndrome, visual tasks will always be a challenge for Sophie. A fun run is scheduled for April 29.

For the first six months of Sophie’s life, she often wept uncontrollably and for hours at a time. Although concerned, and tired, Heather and Nate just figured that’s what babies were like.

“We didn’t know any better,” Nate said.

Finally, when Sophie was 7 months old, they decided to seek the help of their pediatrician, Dr. Jill Miller, convinced that something was wrong with Sophie.

“She was so unhappy,” Heather recalled of her sobbing daughter.

Miller immediately noticed something familiar about Sophie’s face, and she realized that Sophie resembled a former neighbor of hers, a young man who had Williams syndrome, a rare genetic disorder.

“They have typical facial features,” Heather said. “They look alike. They could be siblings.”

Babies with Williams syndrome are also developmentally behind their peers, and Sophie wasn’t developing at a normal pace.

Miller told the Gerdings that they needed to take Sophie to a geneticist, so on Christmas Eve 2003 they arrived at Doernbecher Children’s Hospital in Portland with Sophie in tow.

Miller was right, as a genetic test proved, and the Gerdings were faced with the news that Sophie was going to live with severe, life-long medical and developmental problems.

Today, at age 4, Sophie spends a lot of her time smiling, singing and enthusiastically greeting strangers. Like many people with Williams syndrome, she is extremely outgoing, and eventually, she’ll be extremely verbal as well.

“We go through the store, and she has to say ‘hi’ to everybody,” Heather said.

Adults with Williams syndrome may not be able to tie their shoes or do simple addition problems, but they’re usually extremely articulate.

Sophie is developmentally behind her 2-year-old sister Ava, who was born without the condition. Sophie didn’t walk until she was 2, and now, is just learning how to speak.

“She’s fascinating,” Heather said. “She has huge peaks and valleys.”

Williams syndrome causes a number of physical and cognitive issues in addition to developmental problems. Sophie has severe visual-spatial difficulties, meaning she has trouble going up and down stairs, or sometimes even crossing a room that has unfamiliar objects on the floor, like a throw rug. She is extremely sensitive to noise, and has a hard time focusing on simple tasks.

She also has Supra Valvular Aortic Stenosis, a heart condition that causes a narrowing of the aorta. Like other people with Williams syndrome, Sophie’s tissues are thicker than normal, which causes her distinctive full lips and puffy eyes and upturned nose, but could also cause internal problems when she gets older.

One of the aspects of Williams syndrome that the Gerdings find particularly fascinating is the extreme musicality of many people with the syndrome. Sophie is already demonstrating this trait.

“She can only put four words together but she can sing you a wealth of songs,” Heather said.

The Gerdings have done a lot of research since Sophie’s initial diagnosis.

“I needed to become an expert on what’s going to help her best,” Heather said. “It’s that Mother Bear thing.”

Occupational therapy and physical activities such as horseback riding will help Sophie as she grows up, but the Gerdings know that she might never be able to live independently. They’re trying to arrange interactions between Sophie and other children with Williams syndrome and plan to attend a conference this summer in Virginia.

They’re also educating themselves as much as possible about the syndrome, so they can do everything in their power to enhance Sophie’s life.

“She’s so special and so different,” Heather said. “Her learning profile is going to be so different. It’s going to take a lot on our part to get the right education so she can be the best she can be.”

At a glance

Heather Gerding’s best friend, Amy Smoker, organized a 5K Run and Walk last year called Sophie’s Run.

The event raised awareness about Williams syndrome, which often goes undiagnosed or is mistaken for Down syndrome, and to raise money both for the Williams Syndrome Association and for Sophie Gerdings’s future needs, including the possibility of sending her to a special post-secondary school for adults with Williams syndrome.

This year, Sophie’s Run is 8 a.m. April 29 at Willamette Park. The registration cost is $20. Those who register before Tuesday, April 18, will get a T-shirt with their registration, but registration lasts until the day of the event.

For information, call 753-1550 or e-mail JNSmkr@aol.com.