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Celebrating at the Williams Syndrome Christmas party

Posted on Monday, December 17, 2012 at 9:46 am

On Dec. 1, 2012, a group of families with children who have Williams Syndrome (WS) gathered for a Christmas party. This

Bill Dunn brought poinsettias to show his thanks to Carita Crain (left) and Carol Reynolds (right) for planning the party.

party was held at the Lincoln County Firehouse 1, in Troy, and everyone who attended had a wonderful time. There was Christmas music and karaoke (provided by LLS Music, LLC), delicious food, and good company. The WS guys and girls and their families took a tour, given by fireman Lee Schieffer, through the firehouse and the trucks. Everyone learned a lot about how firemen rescue people in a variety of ways, and all were able to see the many tools used for rescuing people in need of help. They also saw the firemen’s quarters, the kitchen, the fire simulation trailer, and the fire-gear storeroom. Santa and Mrs. Claus made an appearance as well, and handed out candy canes to each guy and girl with Williams Syndrome. Although not everyone who wanted to attend could make it, there will—in all likelihood—be another party next year, reviving the tradition set years ago by Carol Reynolds, the grandmother of a WS girl.

The following is courtesy of Abby and Carita Crain.

One of the friendliest people in Troy is my daughter Rebekah Crain.  She is often seen in one of the grocery stores, or walking in the park.  She almost always greets you with a “Hi!” and lots of times she will ask how your day is going. If Rebekah meets you once, she will probably not forget you.  She will remember you more than a year later; sometimes even 20 years later!  When we go shopping, I might be in a hurry to get the job done, but Bekah knows what is really important. She focuses on the people she sees, and she takes time to speak to everyone she can.

When Bekah was born, we already had another child who was two and a half and extremely verbal. We thought it was unusual when Bekah started saying “Hi” to people at only four months of age, but we thought it was just her big sister’s influence. We were more concerned about Bekah’s constant crying, lack of sleeping, and the delays in physical milestones. However, the doctor assured us that nothing was wrong with our baby; the problem was that we were spoiling her, because, after all, she was talking so early. The advice from everyone at the time (neighbors, church nursery workers, nurses, and family members) was that we should just set Rebekah down and she would learn to sit up, crawl, etc., on her own.  If we would just quit holding her so much, they said, she would learn to walk.

Our parental instincts told us different, so we continued to sit up with her at night, continued to hold her through the crying, and watched her language skills progress while other skills did not. It was only after our third child was born that we had enough backbone to approach the pediatrician again and tell him that it wasn’t our fault and we wanted/needed some answers. That day, the doctor had received a poster in the mail from a parents’ group, with pictures of children that have Williams syndrome. He saw the resemblance between those children and our daughter Rebekah, and sent us to St. Louis Children’s Hospital for confirmation.  Based on facial features and her history, she was diagnosed with Williams syndrome in 1985 at the age of three years and two months.

We finally had some answers. It wasn’t our parenting skills that were lacking, but a piece of a chromosome. In 1993, the missing gene was identified, and a blood test became available to diagnose people. Individuals with the syndrome are missing about 20 genes on chromosome #7 including the gene that makes the protein elastin.  This deletion accounts for many of the physical features of Williams people. Some medical and developmental problems are probably caused by deletion of additional genetic material neighboring the elastin gene. Many people with the syndrome remain undiagnosed, especially adults who may have not been to a doctor who knows about the syndrome.

I tell people that Rebekah has assymetrical intelligence.  She can cook gravy from scratch but she can’t measure correctly. She can read the newspaper but cannot count very well.  Her vocabulary continues to expand, but she struggles with basic handwriting. She might not notice when she empties the trash and some of it spills on the floor, but she recognizes sadness and joy on the faces of strangers.  Much of her free time is spent swinging at the park or in our front yard, and she is usually singing praises to Jesus while she swings. Rebekah will always need assistance to make it through life, but then, don’t we all?

What is Williams Syndrome?

Williams Syndrome (WS) is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side-by-side with striking verbal abilities, highly social personalities, and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly, and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had previously been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems.  Children with WS need costly and ongoing medical care, and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. Also, as adults, most people with WS need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees, for example working at senior homes and libraries or as store greeters or veterinary aides.