Newly Diagnosed with Williams Syndrome

Although your journey as a parent will be different than what you expected, rest assured that your journey will be equally as joyful and wondrous. Before you begin reading about what to expect, we hope that you will find comfort in these words: “you are not alone.” There are many families dealing with Williams syndrome.

The diagnosis can come at varying ages. Regardless of when your child was diagnosed, the first few days following the diagnosis are often the hardest. You may be confused, sad, scared or even angry to find out that your child has a genetic condition. Some people accept the diagnosis and immediately move along to find what to expect next. Others experience the classic stages of grief. Whatever your response to the diagnosis, please know that there is no “right way” to react and you should not feel guilty about being sad or angry. Also, know that many times one parent reacts differently than the other.

As you read through all of the information on our website regarding Williams syndrome, we hope that first and foremost you consciously make an effort to see your child as your child FIRST and not see “Williams syndrome” first. Your child is the same child you fell in love with. Your dreams are the same. The journey to reach those dreams may just be a little different than you expected. It can be overwhelming to have your child diagnosed with a genetic condition. Our hope is that you find answers to many of your questions throughout our website and inspiration through reading about stories with families that have children with Williams syndrome.

We have a Support Group on Facebook designated primarily for parents and caregivers of individuals with Williams syndrome: https://www.facebook.com/groups/williamssyndromesupport/. Here you will find that you are indeed NOT alone and we provide a forum to ask questions, share experiences, and information.