Re: Grandaughter with charge syndrome

[Guest guest]

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I'm sorry to hear of the difficult time your family has had, but I'm

glad Ali will be joining you. My daughter with CHARGE, Aubrie, is 7 yrs

old. She never had a trach, didn't have choanal atresia, is in regular

1st grade with an aide, and doing well. We had our first appt with an

endocrinologist about a month ago so we have just begun the

investigation into growth hormone, etc. I don't have any advice for you

right now, but I do want to welcome you to the list! I hope you will

find answers and support here. I know it's been a lifesaver for me to

have so much knowledge and support available to me. After Ali arrives,

and you have specific questions, I'm sure there will be folks here who

can help you.

Michele W

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[Guest guest]

Hello-

I am writing in response to your question about where to start for

services in Seattle. I am a genetic counselor and I used to work in

Seattle. The University of Washington Medical Center has an

excellent genetics clinic, as well as numerous other pediatric

specialists and specialty clinics. It is a tertiary care center and

I recommend you start there. A pediatric geneticist will be able to

asses your grandaughter, answer your questions and refer her to the

right specialists. Dr. Bonnie Pagan, who co-authored the original

paper coining the term " CHARGE " is a geneticist at this center. They

have several other geneticists as well. Their number is .

Good luck!

-Kyna Byerly