Williams syndrome affects 1 in 10,000 children | NevadaAppeal.com

Williams syndrome affects 1 in 10,000 children

Brian and Jessica Hendrix
Special to the Nevada Appeal

This week is Williams syndrome awareness week. According to the Williams Syndrome Association, Williams syndrome is a rare neurodevelopment genetic disorder caused by the deletion of several genes from chromosome number 7, which affects approximately 1 in 10,000 children every year.

WS is characterized by numerous medical and physical characteristics including cardiovascular problems, facial features, mental disabilities, and developmental delay. WS is often diagnosed through a genetic FISH test to identify the genetic abnormality. WS is often associated with Autism and some WS kids can present autistic characteristics but Williams syndrome is not an Autism Spectrum Disorder as it is often believed to be.

Our son Tyler, 6, was diagnosed with WS at 18 months old after a pediatric cardiologist suggested he had the facial characteristics of the disorder. Tyler is a very outgoing and loving child who like every child has day to day needs; we just have to approach some of these needs in a different way. He is no different than any other child at heart.

WS children require a varying degree of medical attention for numerous health problems. Our son, Tyler, has been diagnosed with cardiovascular problems, thyroid problems, esotropia, and other physical abnormalities. Thanks to a great group of doctors we are able to monitor and control most major problems allowing him to live a full and normal life.

It can be a struggle for some parents to provide the proper care these children need, both financially and emotionally. This is where the public can help by supporting various foundations dedicated to providing assistance to families who need it. It also is important to make sure WS children get the proper education as they are not equipped to handle a normal educational setting and often require a more one-on-one educational process. It is important that these children receive the proper recognition and that their educational needs as well as the educational needs of other disabled children are taken care of.

WS children are very outgoing and social, often exhibiting little social fear toward strangers making it difficult as a parent to monitor the safety of a WS child in public. Their outgoing personalities do allow them to make friends very quickly, however, they may not understand criticism or bullying that many face for being different. In today’s society it is very important to understand disorders such as WS to prevent such unnecessary behavior that can be very discouraging to children who are not fully capable of understanding their surroundings. WS children can have above average abilities such as language but have difficulty maintaining conversations related to the same topic for extended periods of time. Many WS children exhibit excelled abilities in music ranging from instruments to vocals with perfect pitch.

It is important to raise awareness for WS so people may understand these disabilities and understand that there are families out there who are affected by these things every day. You may have a friend or a neighbor with a WS child and perhaps never knew. It’s time to get the word out and share these outstanding and loving children who have nothing but happiness to offer the world. For more information on WS or how you can help please visit http://www.williams-syndrome.org.