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Wednesday, May 2, 2007

A diagnosis for Katy?

I think I may have stumbled across a diagnosis for Katy. I was talking to another mom of an autistic child about all of the special, beautiful characteristics of my kids. She said that my words reminded her of an article she had read about a little girl that had a genetic syndrome. Her father said many of the same things about her that I had said about Katy and Sean. They are non-verbal, but the communication is so great, they laugh and play and are just a ray of sunshine. On that page there was a link for more information on this little girl's syndrome. It is Cornelia deLange Syndrome(CdLS). I really feel like this may be our answer we have waited so long for. I contacted my geneticist and she said,"No Katy is too pretty to have that." I almost fell out of my chair I couldn't believe that a professional would say something like that. I mean, does that mean that CdLS kids are ugly? Children are a gift from God no matter what their ability level and they are ALL beautiful. Anyway here is a link to the CdLS Foundation website. http://www.cdlsusa.org/

5 comments:

Anonymous said...

Well Jenny The Doctor may have used an incorrect syntax, and you are correct about beautiful children, I have to think the doctor meant something slightly different. All those children do have a certain look that I dont really see in Katy. Some things is just not for us to know. Katy is more then a special needs child, She has something to give and already gives it in large abundances. God knows things that we will just never know. Katy is special and she is an inspiration to me, as I see her overcome her problems one by each.

Ettina said...

I think CdLS kids are pretty. I love the way CdLS kids look. Now, this is my personal opinion - unlike most people, I don't consider 'pretty' to be a universal thing, just a matter of opinion.

Ettina said...

anonymous, I think you may be judging the doctor too lightly. I have seen many doctors say really prejudiced things.
Personally, I really like the look of CdLS kids. I especially like how their eyebrows look. This is just my opinion. I've never understood why thin, pale blond girls are considered beautiful, I think dark skin is more beautiful. Beauty is in the eye of the beholder. The most important thing is that the person themselves likes their own appearance and is proud of who they are (something I have a lot of trouble with). Everyone should be beautiful in their own eyes, and not in a way that is nasty to others.

Anonymous said...

We get the same uncaring / unthoughtful comments from our genetist. Must be pre-requsit for their studies.

Anonymous said...

Well I dont always want or need a thoughtful comment from a doctor anyway. I just want the straight up truth from him or her. But anybody doctor, preacher, plumber or computer tech can always use a little tact.
Beauty is in the eye of the beholder, I tend to find ugly people after I see how they act.