Tuesday, May 10, 2011

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.

13 comments:

doozee said...

I know nothing about it... thanks for posting this. I'm going to check out those blogs!

mama to j and bean said...

Thank you so much for posting this and helping to raise awareness for WS. Our kids - with DS, WS or any other chromosomal change - are beautiful and amazing and they deserve all the recognition they can get!

Jen Currier said...

Thanks for making us more aware of Ws, Becca! I have felt so grateful for the suuport I've received from many other parents of a child with special needs and I don't know what my experience would be like without it!! BTW- when you Google "Williams syndrome", I found some charming traits associated with it (as listed by Wikipedia). Things like: Most individuals with Williams syndrome are highly verbal and overly sociable, having what has been described as a "cocktail party" type personality, and exhibit a remarkable blend of cognitive strengths and weaknesses; Individuals with WS can also tend to demonstrate a love of music, and appear significantly more likely to possess perfect pitch. Interesting! While these may be stereotypes much like we hear "They are always happy" about our children with Ds, I was happy to see a more balanced perspective on a common information search site! :)

Melissa said...

Thanks for posting these links. I don't know anything about Williams syndrome and am off to check out these blogs.

Becca said...

I probably should have posted the link for the Williams Syndrome Association, too...it's http://williams-syndrome.org/

Sorry!

Beth said...

We have two dear friends who have Williams syndrome. I just love them forever. Brent works at a hospital and lives independently. He doesn't like to cook, so he uses a good portion of his paycheck dining at the hospital cafeteria! Katie works at Pizza Hut and lives in a group home. We met her when Hannah and I were having lunch one day. Katie, who was the hostess/server, came over, peered closely at Hannah and said to me, "Hey! It looks like she has Down syndrome! My best friend has Down syndrome!" Katie has an amazing memory--really impressive.

There was a PBS documentary about Ws many years ago. It might be interesting to hunt it down and watch it--you'd love it.

Becca said...

Btw, I'm so sorry, I put the same blog link twice for each blog! I've just changed Adventures With Baby J and Bean to the correct link.

Alicia said...

Elias went to a special ed school to receive early sintervention, so we had the chance to meet a lot of kids with different special needs, i loved to talk and to share and to learn.

to be honest, i think i've never hear of WS but as I did click to the links and then did a little googling, I remember I met a kid once. He was at my private school (wich by the way was very inclusive, althought it didnt said anything of inclution or whatever we grew up with several kids with different special needs) including this little boy who took the same school bus, at that time i didnt knew he had a "disability" I knew he had different health issues but that was it. I never saw him really "different" or even thought about a syndrome until now. his face just popped out in my mind.

I would love to know what happend to him..... I guess Ill need to do some research :)

Alicia said...

and reading Jen's comment, this boy from school was extremely sociable!! he talked ALOT!! and yes he loved music so much!! every bus ride was a music concert hehe he sang a lot.

jesshaydel said...

Thank you so much for posting this you're an amazing woman

Stephaniequinonez said...

Thank you for spreading the word about Williams Syndrome! My 6 year old daughter has WS and it is wonderful that you wrote about it!

Mrs. Cody said...

I came across your blog via Mama to J and Bean's twitter. I have a Williams Syndrome baby and it can be a very rough experience. He just had his second heart surgery yesterday and is in critical condition. Thank you SO so so much for spreading awareness. I love seeing comments on how people have learned something new.
Love this post!!
Ruth-mama to Corbin
http://ofkidsandcows.blogspot.com

Erin said...

Thank you so much for taking the time to spread WS awareness!!!

Mom to Barrett (3) and Sophie (2) who also lives with WS.