Williams Syndrome Awareness Week-Definition

In honor of day three of WS Awareness Week, I am sharing the story of another WS mommy. Her daughter Abi needed heart surgery, but no one was prepared for what would happen afterwards. This is an emotional piece full of fear and love. Please take a moment to read her story.

As I go through this experience, the shared stories of other WS mothers help me get through the day. Imagine your life without the internet...now imagine if you were going through something like this and had no idea anyone else had too. Just knowing that I am not alone and that there is a whole community of other people who understand is very helpful. We have all come together and become a tight knit and loving family. The WS Facebook page is full of questions and answers, photos, and information. I know if I ever need someone to talk to or a question about Williams Syndrome, these are the ladies to ask.

I know a lot of people have never heard of Williams Syndrome, and quite a few may not even care.
I just want those people to at least heard the words: Williams Syndrome. After you read this, then you will be that much more educated and maybe some day, you will have the answer to someone's question.

Williams Syndrome

Williams syndrome 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. They show no racial bias. Parents often say the joy and perspective a child with WS brings into their lives had 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. And 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.  
Just as important are opportunities for social interaction. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression.  They are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships.


Becca said...

Thank you for your comment on my blog! I'm so sorry to hear of your sweet boy's health issues. I hope his recovery comes soon... My daughter had heart surgery at 4 months old.

I'm glad I could help spread awareness - we're all in this together. :-)

Teresa said...

Just stumbled across your blog for the first time. My daughter with WS is now six years old, but her first year was a roller coaster with open heart surgery and four cardiac catheterizations before she was 11 months old. I am praying for Peanut and your family. I know what a rocky road you are on in this journey.

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