I hate to say I told you so but...
Williams Syndrome.
Thembi and I diagnosed her MONTHS ago thanks to Google and Wikipedia. Who needs diagnosticians and genetic tests when there's the internet? We've been referred to another doctor: Dr. Kaplan who specializes in Williams Syndrome.
We are preparing ourselves to raise an overly friendly, emotionally sensitive, musically talented daughter with a bad heart and bad teeth.
http://www.williams-syndrome.org/forparents/whatiswilliams.html
Subscribe to:
Post Comments (Atom)
1 comment:
Hey Gonz,
Thembi filled me on the news. I just spoke with my genetic counselor and she said that the Williams Syndrome Association is probably the best support group around. You already have a link to their site, but here is their webpage for resources in the tri-state area http://www.williams-syndrome.org/community/tristate/resources.shtml
They are a member of the Genetic Alliance, a DC based advocacy group for various genetic conditions. www.geneticalliance.org
The center at CHOP is great but if you need any info about the genetics side of things, let me know.
Post a Comment