We all want increased awareness for Williams syndrome. But it is likely that for each of us, the importance of awareness varies. Each of our children is AN INDIVIDUAL with Williams syndrome – that means that each of our journeys with WS is individual too. If our children are medically fragile, research may be the driving force for awareness; if our children are struggling in school, awareness leading to better education may be paramount. Similarly, if our child is young and we are just embarking on our journey with Williams syndrome, our reasons for awareness may be very different than for those who have an adult with Williams syndrome. Whatever the driving force for increased awareness is for you, it is attainable if we work together.
Here is one mom’s take on why awareness for Oliver is so important to her, husband Eric and sister Penny.
Simply enough, we raise awareness with one main goal in mind: acceptance. We hope by explaining Williams syndrome and getting people comfortable with Williams syndrome it will lead to a life for Oliver where he is not seen as "less" than his peers and is given equal opportunity to succeed. Williams syndrome is not something that is going to go away. He won't grow out of it, and it's going to cause lifelong struggles for him. Getting people comfortable with his differences now will only lead to acceptance down the road.
We also hope that by spreading awareness the medical community becomes more familiar with Williams syndrome. I won't lie... it's hard to be the medical expert on your child's condition. We've come into many circumstances where we've had to question if the medical staff is familiar with Williams syndrome and the precautions needed to be taken. Luckily, we see this as a time for them to learn and hopefully as the medical community becomes more familiar with Williams syndrome, this will lead to more kids getting diagnosed early and getting the much needed care and therapies early on. Awareness in the medical community will also lead to more researchers who WANT to research Williams syndrome, and the only way we can advance and learn more about Williams syndrome and new advances to keep them healthy and help them develop is through research.
So we post on social media--we post a lot. And we walk. And we attend events. And we wear our t-shirts. And we tell everyone we can about Williams syndrome and the extraordinary gifts and unique challenges.
The WSA is working hard to advance research, and has a registry for individuals with Williams syndrome and their families to join to participate in these research efforts. More medical records means more data and interest from researchers. If you have a child with Williams syndrome and are not involved with the registry, I urge you to learn more about it.