Wednesday, June 4, 2008

"Don't everyone's eyebrows "flare" in the middle?"**

Williams Syndrome is caused by a deletion of genes on the 7th chromosome, which causes many health problems and similar facial characteristics. (The genetic disorder that most people are probably familiar with is Down's Syndrome which is caused by an extra set of genes on the 21st chromosome. Kids with Down's also have health problems and similar facial characteristics.)

When we took Amina to the Williams Clinic at CHOP, I asked Dr. Kaplan if she thought Amina had the typical William's Syndrome facial features and she said Yes! Which is how she was able to pick Amina out of the waiting room of 4 or 5 kids. She said that Amina has the puffy eyelids, chubby cheeks, flared eyebrows, small upturned nose and full lips. I'm thinking, "flared eyebrows? what are you talking about lady?" But I'm also thinking, those are all the things that make her adorable, but what do I know?

I hope it's not illegal to use another kids picture on my blog, but anyway, when I was first looking up Williams' Syndrome, and I found this picture, I almost fainted because I thought she looked so much like Amina:

It has been really interesting to me, talking to other parents and reading other parents' blogs about their children with Williams. Its also amazing how these kids look like each other, but still look like their parents. I'm finding genetics really interesting these days and wishing that I had paid more attention to Mrs. Bratspir in high school biology. I read on one website that the older the kids get, the more pronounced their Williams facial characteristics become. I'm anxious to see how she changes as she gets older.

This weekend we are going on a trip with other families with kids with Williams. I wonder how I will feel with a group full of little kids that look similar to Amina. Will it feel weird? Or maybe it will feel comfortable, like when you go to a family reunion and see long lost relatives. I don't know but I'll keep you posted.

**(title of post taken from a quote from another parent on Williams Syndrome listserv)


camille said...

Hey! I'm so glad you're going this weekend. We'll have to catch up a bit. Connor, Adam and I will be there too and are really looking forward to it. It looks like the weather is going to cooperate too, it's just going to hot and humid. Looking forward to meeting you!

Gina said...

I am excited about Saturday too... and a bit anxious also. I can't wait to see how our little social butterflies interact with one another:) Can't wait to meet you.

Penny said...

Your daughter is beautiful. I hope you had a great time this weekend with the other families

Nancy said...

Oh yes...I have seen this photo on line and diagnosed my son after seeing it when he was 17 months. I thought it was a bit less "pixie-ish" and more "clownish," but I guess I'm not a doctor. :)

Your daughter is incredibly gorgeous, and I love your sense of humor. I have been reading and giggling and sighing. Thanks for sharing.

Nancy (mom to Erik, 3-1/2, WS)

Katie said...

Hello, im Katie,
I just discovered your blog, my son Jaiden isnt WS but we thought he was for ages and so now i hang around anyway :)
i loathe that top diagram, LOL it looks freaky. WS kids dont. They just look cute!
Amina is absolutely gorgeous, i look forward to reading your blog.

Connie said...

Hi, Ginneh! Thanks so much for the comment on my blog! I love your blog and Amina is so beautiful.
This is a club no one really wants to join, but at least we get to be exclusive and cool!!

Julie said...

It was so nice to meet you yesterday. Your daughter is so beautiful.

Laura said...

It was so nice to meet you and your family yesterday! I am so glad that we have these get togethers for the families. Your children are so adorable! Hope to see you at Knobels.

Heather said...

I hope you had a good time and were comfortable. I know that my first time meeting others was a great experience, but cale was nine. It was weird and wonderful at the same time. I sure hope you and your family had a great time.
Amina is absolutely adorable, and i hope you don't mind that I gave her a kiss when she asked for one :) I just couldn't help myself. Those cheeks were just calling for me.
I have to say that connecting with other families has been the best way to deal with all of this ,for us anyway. Thanks so much for coming out with us and braving the heat. It was a pleasure to meet you. Look forward to seeing you all again soon. Heather

Heather said...

and oh my goodness, where did that drawing come from? LOL!

Every minute counts.... said...

I ran across your blog from a link on Penny's and I am so glad I did. Amina is beautiful!! My daughter Abi is 5 and has WS. Can't wait to read more about your family.


Lisa said...

I am so glad I meet you and found your blog I have been a blog slacker LOL. YOu have a great family...Tatum loves her new buddy :)

Laura said...

It was so nice to meet you and your beautiful family!

The Page Family said... name is Jen...I found your blog online and would love to KIT...I have a 3 1/2 year old daughter who just got diagnosed with WS in's been a roller coaster...but it's neat to connect with people that have the same situation as me!...

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