[tri-med] Re: heart surgery

to bad you couldn't have the surgery in the USA.. my son taylor has triosmy
8 mosaic which is one of the rare triosmy's out there. taylor does have the
kidney trouble . and taylor is speech and learning disabled too. . gina son
taylor
----- Original Message -----
From: "pam&darrell" <bifman@xxxxxxxxxxxx>
To: <Tri-Med@xxxxxxxxxxxxx>
Sent: Sunday, September 26, 2004 6:51 AM
Subject: [tri-med] heart surgery


hi everyone.
we are about to meet with cardiologists this week to discuss heart surgery
for tyler's vsd.  he is 2 months old now.  his heart is getting worse.  in
our area, heart surgery is done at toronto sick kids hospital.  it is their
policy not to perform heart surgery on children with trisomy.  as this is
tyler's most serious medical problem, we tend to believe the doctors are
mistaken.  the word policy has begun to sound like a word that includes
statistics, not human beings.  we want to show them why they are wrong.
i would really appreciate it if anyone who is willing would send a photo and
a description of their child listing what they can do , how they function
and do have quality of life. i have already "met"a few of the kids through
their parents so i know they live worthwhile lives-doctors don't seem to get
that.  i want them to see it. since tyler has t13 i would really like to
know if any t13 kids have had heart surgery and what the outcome is.  i
would also like to know about the t 18 kids, too.  darrell and i are very
angry that living, breathing human beings are being lumped into a catergory
that seems to be labelled "discard".  any help anyone can give would be
awesome.

another thing i would like is to find the canadians on the list if they
would not mind.  i want to find out how they have navigated through our
health care system.  quite frankly, we are baffled.

i know i am asking a lot from one email, but everyone on this list seems
willing to step up and help change things for special kids.

much appreciatiom,
pam, hubby darrell, tyler t13 mosiac, kira 2
elora ontario
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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