The Williams Syndrome Association has been a wonderful source of information and support to our family over the past 8 years.
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.
My son was diagnosed with Williams syndrome 20 years ago...never even heard of Williams Syndrome.....my son was in the hospital for failure to thrive...he had not been diagnosed at this point....another mother in the hospital who son had Williams Syndrome recommended that I contact a genetics doctor in Boston ( the mother thought my son had Williams Syndrome). I immediately contacted the doctor and days later my son was diagnosed with Williams Syndrome. 20 years ago there was not a blood test to determine Williams Syndrome...Diagnosis was made through various characteristics of the person. I remember asking the doctor now what, she handed me some papers and a card and said contact the WSA, they can help you with a lot of information and answer your questions. I contacted them and they provided a wealth of information. Additionally they connected me to other families in my area. So 20 years later we are still members of the WSA. Because of the WSA and their dedication to Individuals with Williams Syndrome and their families so many things have changed in the WS community.. There is now a blood test (Fish) to diagnose WS. The WSA works with the top researchers and doctors to help gain knowledge and awareness about Williams Syndrome. The conventions brings doctors who are familiar with WS and provide current information. What I love most about the WSA is they get it....they don't provide weighted blankets or leap pads to select individuals, they don't flood my email with invites to tupperware, avon or scentsy parties, what they provide is knowledge, awareness, path to doctors, WS clinics, networking, social events, conventions, research studies, scholarships, all the ways to help enhance the lives of the greater Williams Syndrome Community. One of the best feelings and sure to bring a smile to your face is to see all of the wonderful friendships that our children have made from attending conventions and social events...what a great group of people.
Our son was 14 months old when we received his WS diagnosis. Without the WSA, I don't know what we would have done! They sent me a Welcome packet, explaining WS, and put us in touch with other families in our area with the same diagnosis. They also put us in touch with top WSA specialists, helped with school, held conferences for us explaining what's going on with research for WS. They are a Wonderful Organization! I would like to Thank them for being there for our son for the past 15 years!
When we first received the diagnosis we had no idea what to do next. I thank God every day for the Williams Syndrome Association and the support they have provided me and my family. Because of their close ties with the medical and research community, we have been able to keep up on all the latest developments. I don't know what we would have done without them.