I am a new member to this group that until last night did not know
that much about Noonan Syndrome. I have two brothers that have one
healthy child each. Each brother also had a child that died from what
doctors were saying was a rare disease called Noonan's. At the time of
these deaths I was to young for anyone to talk to me about the disease.
My one neice lived to be 5 months old and the other lived to be five
months old and my other neice lived to be 6 years old. The six year
old lived her whole life in pain and half of it in the hospital. This
took alot out of my brother and sister-in-law. He has always had a
hard time dealing with it. My sister-in-law has always wanted me to
have testing done before I had children, but never came out and said
it. I think it is because my brother did not want to deal with it.

This all came to a head for me because my wife of 26 days is
pregnant. We have been together for 9 years and did not think we would
be able to have children because of endrometrosis (hope that is correct
spelling) that she has had since she was 19 years old. The doctors
told her she probably would not be able to have children, but it would
be the best thing for her. We went on our honeymoon and said if we get
pregnant great, but if not ok. Well great happened, but now we are
very concerned from the information my sister-in-law told me.

My sister-in-law told me that this is a rare disease and is in
alot of people, but not always to the degree of my neices. I started
reading the features of Noonan Syndrome on the internet and found that
some of the characteristics or seen in our family. I have hearing that
has been bad since childhood, short stature (5 7') and am near sighted.
My oldest brother has short stature, near sighted and has a flat,
broad root of nose. The brother in the middle of us does not have any
of the characteristics.

I am a little more concerned that the baby that we will be having
in 8 months will have the problems that my two neices had. I want to
try to find every website I can to find out any information about this
disease. When my neices' were born in the early to mid 80's the
syndrome could not be detected before childbirth, but I don't know if
that is true anymore.

Please forward any new information or websites to my e-mail
address billycpa@....