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Mom to a beautiful girl with ws

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Williams Syndrome Association
November 16, 2012

My almost 4 year old daughter was diagnosed with Williams syndrome when she was only 3 months old. I was totally unaware of Williams syndrome. When I was first told about the array of health and cognitive issues she could possibly experience, I was numb...I asked, why me?...this wasn’t supposed to happen, at least not to me?! I had to take time to mourn the little girl I thought I had brought home from the hospital almost 4 months ago. Grasp what I was just told and soak it all in.

With such a rare condition, it can be a challenge to find information. Although my pediatrician had “heard” of WS, she was not able to offer me much information except for what she found online. Most information found on-line is frightening because there is more written about the extremes. I was determined to do everything I could to provide the best life that I could for my little girl, but it was a struggle finding any real life information from other WS families as well as accurate information from the experts.

I was very fortunate that my developmental pediatrician from Kennedy Kreiger knew exactly where to direct me! She directed me right to the WSA. With the help of the WSA, I was able to connect with local families in my area as well as an amazing Facebook network of families across the country. With their help and guidance I was able to connect with national Williams syndrome experts. I even took her to a the leading researchers for Williams syndrome at the Univ. of Kentucky Medical School where she was examined and tested. This has given me tremendous guidance in the areas we need to be concerned with in her development as well as suggestions on where to go for the proper counseling and therapy.

Without the WSA my path as a newly diagnosed parent would not have been what it is was. To be able to connect with others who live and breath what I live, to have the support network, the plethora of information from others that have had similar experiences, and most importantly to have a place that I know I can reach out to at any given time for the best medical, educational, and emotional advice to help my daughter and the rest of my family is simply indescribable. Their mission is not to find a cure for WS, because there is none, but rather to “enrich the lives of individuals and families affected by William Syndrome and similar conditions through support, research and education.” The WSA is not just an organization, they are more like my extended family. We are a community, who support each other and each others families. It is such a different type of a bond, something that I never would have expected. After finding them I did not feel so alone. They got it and they were there for me! And I can tell... they will be there for me and many, many other families who are finding how much they can benefit from the WSA resources.

The WSA just celebrated their 30th year of helping families and making a difference in the lives of people with Williams syndrome.Every other year the WSA holds a 3 day gathering of more than 1200 research educators, therapists, and various physicians who specialize in this condition, which all of us were so unaware of. We just attended our first convention this past July of 2012 in Boston. The convention offered, in one place an ocean of resources and information to individuals with WS and their families. It was so wonderful to be filled with such important information that pertains to my daughter as well as meeting so many families that I have and will be able to connect with over the internet for support and real life pertinent information. Not every family is as fortunate in having the opportunity to attend and thankfully the WSA does provide scholarship funding for families that may not have the means to attend.

As I mentioned it is so important for me to devote all the time and energy possible in making the best life for both of my kids! I am extremely grateful to the WSA for continuing to play a huge role in helping me do that for my daughter. I truly feel indebted to them.

More feedback

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served