I've been involved with the IWSA for the past nine years and have no idea where I would have been without the support, information, and guidance of other families with loved ones with the same rare disease/syndrome. My daughter was not diagnosed WAGR/11p deletion until she was 11 years old and once I met this group it was instantly obvious that I would never be alone again in our journey. I have chosen to serve on the Board and as Board chair and have received so much more from IWSA families than I will ever be able to give. This organization is dedicated to supporting WAGR families and has been very proactive in spreading awareness, supporting families around the world, and educating doctors, teachers, family and friends. As a very small organization representing an ultra rare disease, the IWSA is making huge strides into promoting research and reaching out to help improve the lives of individuals with WAGR/11p deletion syndrome. I have checked my role as Board Member but I am also a donor and parent to an individual born with this rare condition.
I suppose we do not come to this group originally by choice. Our families have a member who is born into it by virtue of having this exceedingly rare genetic syndrome. We connect with this organization out of a deep sense of need. Over the years, many of the families have become like extended family members to us.
Our general doctor was the one who found the IWSA for us. As first time parents we were scared enough, but when Evie was 3 days old we found out that our lives were about to take a dramatic turn by hearing that she had no irises in her eyes, that she could be at risk for Wilms Tumor and that we needed to have her tested for WAGR/11p Deletion Syndrome.
Thanks to the IWSA, a life that I thought woudl be full of fear and disaster has become one of challenge, joy, perseverance, searching, learning and celebrating. We in the IWSA have changed the acronym WAGR at times to mean Winning Attitudes, Great Rewards, or even What A Great Ride...because as loved ones, we can all see how special our kids are, and how amazing their lives can be...the celebrations far exceed the moments of mourning...
I am so thankful to have found a group that started only a decade or so ago, that was formed by a few moms who said, "There's more of us out there...let's find them"~and now links families across the world via the internet~we are one~we are few, but we are strong!