Williams Syndrome Awareness Week

About 4 1/2 years ago, when Samantha was a baby, a man that worked for me in my old retail life revealed that his young, school-aged daughter, had Williams syndrome.  I had never heard of it, and my only experience with chromosomes was in learning about Down syndrome.  I was so green in this new world surrounding me that I didn't think to ask him more about it.  I had never yet heard the letters I-E-P used together, and was just learning P-T, O-T and S-T.  It was pretty overwhelming already, and learning about some other syndrome that couldn't possibly have such huge ramifications for the parents and the child as Down syndrome did for me, was just a waste of time.  My issues were far greater, and he couldn't understand.  So I asked a few cursory and polite general questions, learned that she had some delays, and moved on with my work days.

The fact is, while it is much more rare than Ds (about 1 in 10,000 babies born has Williams syndrome and 1 in 691 has Down syndrome), there are quite a few similarities.  There are some physical markers (harder to detect in infants), developmental delays in speech and fine and gross motor, learning delays, heart conditions and other traits.  Williams syndrome is the deletion of genetic material from chromosome 7.  Down syndrome is the addition of an extra chromosome 21.

I have recently begun reading the blogs of two parents of children with Williams syndrome, Adventures With Baby J and Bean and I Have the Missing Link and have learned so much more.  Because there are so few markers present at birth to raise red flags, diagnosis often comes very late for children with Ws.  Because the condition is relatively rare, there is so much less information and support out there for families with children with Ws.  With this week being Williams Syndrome Awareness Week, I hope many more people will seek to learn more, and to open their arms in support of these families.

I wish I had taken more time to learn about the daughter of that guy I worked with, but I was so new with my own daughter's diagnosis that I was a bit overwhelmed.  I hope he and his family received the supports we have available to us, and that his daughter is able to thrive in a world that is only just beginning to embrace the differences in people, but that still has a long, long way to go.