[tri-med] Re: Can you help?

I have been in touch with our genetics department, and they are delighted=
=20the I want to assist!  Trust me, the first site that any parent will b=
e given is this!  However, the norm in South Africa is to leave the baby =
to die, so it may be a struggle to get doctors to treat our babies with r=
espect.

LOL

Kathy s


-----Original Message-----
From: Glenn Hardy [mailto:hardyboyz@xxxxxxxxxxxx]
Sent: Wednesday, July 23, 2003 6:15 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: Can you help?



>>>>>>>>>> what I am getting at is, our pediatricians and obstetricians
should be better informed of the "real" statistics of our kids'
syndromes and be able to give us non-biased information, instead of
sending us home to find things on the internet.


The thing that drives me nuts is that even when they know that there are
long term survivors they don't share it.  My Rebecca is 12 years old and
I am an Rn working in labour and delivery and the doc's know I have a
T18M child but no one asks me to talk to others.......they see her as
the exception, I have been in contact with the local genetics people I
have sent pictures,  its as if they don't want to tell people that these
kids do survive and thrive=20


Susan mom to Rebecca T18m age 12

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=20                 Families Helping Families On-line

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