This Author is raising awareness about Williams Syndrome, a rare genetic disorder

Author Marjorie Strebe Shares Insight on Raising Daughter with Williams Syndrome

BY MARJORIE STREBE

What is Williams syndrome? It’s a rare genetic disorder that most people know nothing about. Even most physicians know very little about the syndrome unless one of their patients has it.

Williams syndrome has only been on the medical radar for about 50 years. The experts are still trying to figure it out, and research is ongoing.

Another Day, Another Challenge: The Biography of a Child with Williams SyndromeAccording to Dr. Dan Brennan from the Medical Reviewer, approximately one in every 25,000 babies is born with Williams syndrome, while the NORD (National Organization for Rare diseases) is a little more conservative, stating that approximately one in every 10,000-20,000 in the U.S. are born with Williams syndrome. And the Williams Syndrome Association (WSA) posted on their website that the disorder affects one in every 10,000 births worldwide.

May is officially “Williams Syndrome Awareness Month,” but the WSA attempts to raise awareness of Williams syndrome every day of the year. It’s only through awareness that they can attract the research interest and funding support that’s needed to answer the myriad of unanswered questions revolving around the syndrome.

During the month of May, volunteers across the country help the WSA by hosting various events designed to promote awareness of Williams syndrome – picnics, fund-raisers, educational events, walks, and more.

In her recently-released book, Another Day, Another Challenge: the Biography of a Child with Williams Syndrome, the third edition ($16.95, December 2021), Marjorie Strebe gives a first-hand account of her daughter, Michelle, as she shares some of the heart-warming moments and many of the challenging experiences of rearing a child with Williams syndrome.

  • An adult with a large vocabulary – “Mom, I’m discombobulated.”
  • Who doesn’t always understand the meaning of the words she’s using – “The sky looks ominous.”
  • Or how to explain an ultrasound – “If the doctor sees what he sees, then it’s a boy. If the doctor doesn’t see what he doesn’t see, then it’s a girl.”

Yet most people can’t see past their intelligence to their learning disability.

“Friendly to a fault, these children know no strangers,” said Strebe. “They’ll hug anyone, anywhere. They’ll go with anyone, which can be a blessing if they’re meeting a family member for the first time. But it’s a dreaded nightmare at the grocery store or around the neighborhood. They have no concept of dangerous situations or people.”

An Air Force veteran herself, Strebe grew up in a military family and married an Air Force Tech Sergeant. Their daughter, Michelle, is the youngest of three children and the only one with special needs.

Another Day, Another Challenge: The Biography of a Child with Williams Syndrome, Third Edition ($16.95, 290 pages, 6 x 9, paperback, ISBN: 978-1-7372025-2-3) is available at most major online book sellers. For more information, visit www.marjiestrebe.com.

To buy the book, visit Amazon.

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