Ashley's Story: Parent's Letter ProjectWilliams syndrome- Ashley's mom
Now that you know the diagnosis of your child, you must have lots of questions, so let me start by telling you about Williams syndrome. Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities, and an affinity for music. WS affects one in 10,000 people worldwide. There is an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.
My daughter was born with Williams syndrome, but nobody told me at the hospital, even though she was born with a heart murmur. I knew something was wrong but I couldn't tell what it was. She was late on every milestone, and her diagnosis came last year. She is now seven years old and is having lots of problems with learning and speech, but we are very blessed that she is healthy, and has less problems than other kids with WS.
We do everything we possibly can do to help my little one: occupational therapy (OT), physical therapy (PT), speech therapy, visits to cardiology, developmental pediatrics, and even driving far away when necessary, I'm sure you will do the same for your child. It is not easy, but I'm sure you can do it.
We love going to Children's National. The first visit was very hard since we found out about the diagnosis, but after that we have only had good visits. We see not only the geneticist, but the nephrologist as well. My daughter loves going there.
Cynthia, Ashley's mom