Wednesday, August 22, 2007

Welcome to our site!!!

Hi! And welcome to the Trisomy 17 site. Trisomy 17 is so rare, that there is very little information out there. Many "experts" claim that children with a trisomy 17 condition just don't exist, but they do. Some have done much better than any expert ever expected. Caroline is one of them.

The purpose of this blog is to try to compile information for any parent who has a trisomy 17 child, or has just received such a diagnosis during their pregnancy. It is also to show that life does go on and can be fairly "normal" even when one of your child is considered very "abnormal".

When you find out about such a diagnosis, you are scared to death and don't know what to do or where to turn. We found out about Caroline at our 20 week ultrasound and subsequent amniocentesis. We didn't want to end our pregnancy, and all experts claimed she would not survive birth. If she did, she wouldn't survive long after that. Fortunately, they were wrong and she celebrated her 4th birthday this summer. We have our good times and our bad times, like any family does, but our life with Caroline has become "normal".

4 comments:

six1661 said...

Hello, I too have a daughter with Trisomy 17. She is soon to be 21 years old. We are currently in the hospital with pnemonia. I have a brother in law and his wife that live in Myers Town, PA. Didn't know if you wanted to compare any information on this? thanks
Cindy,
Richmond, Virginia

Anonymous said...

My son was just diagnosed with 17q12 duplication syndrome, aka partial trisomy 17q. He is twenty months old. I'm struggling to find info and others affected even though the geneticist said several dozen exist.

Anonymous said...

My son was just diagnosed with 17q12 duplication syndrome, aka partial trisomy 17q. He is twenty months old. I'm struggling to find info and others affected even though the geneticist said several dozen exist.

Anonymous said...

My son was just diagnosed with 17q12 duplication syndrome, aka partial trisomy 17q. He is twenty months old. I'm struggling to find info and others affected even though the geneticist said several dozen exist.