[tri-med] Re: signing up

Content-Type: Text/Plain;
  charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi to all on the list, I am meeting a friend this week here in Queensland
Australia who has t17 and I cannot remember how I signed up to tri med.  =
I
am sure she would be very interested to sign up and be part of our
communications.=0D
 =0D
Thanks for your help=0D
Tanya (mum to Kye t14m)=0D
 =0D
-------Original Message-------=0D
 =0D
From: SHAMOND73@xxxxxxx=0D
Date: 18/02/2008 8:35:42 AM=0D
To: tri-med@xxxxxxxxxxxxx=0D
Subject: [tri-med] Re: the truth disappears, quickly=0D
 =0D
 =0D
When dr's look at Jason and hear about his T17, they all say the same thi=
ng=0D
" we have never seen a T17 baby", and a lot of them did not think it exis=
ted=0D
and  have never heard of it. So it is definitely possible there is just n=
o=0D
protocol defined for other rare chromosomal syndromes like T17 in canada =
or=0D
anywhere. how would there be, when there is always a wait and see approac=
h.=20
"we=0D
have no idea what he will be like".=0D
 =0D
But the more "popular" "well- known" syndromes like  T18 and T13 do  come=
=0D
with statistics and history and so the drs have been trained  somewhat wi=
th
some=0D
type of protocol. totally makes sense. unfortunate, but  this is why the=0D
health care system universally needs to be changed.=0D
 =0D
Sharon=0D
 =0D
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D
=0D
 =0D
 =0D
 =0D
In a message dated 2/15/2008 9:45:49 P.M. Eastern Standard Time,=0D
b_farlow@xxxxxxxxxxx writes:=0D
Dear  Friends,=0D
Well, that certainly didn't take long. I told the geneticist that  I was
very=0D
pleased to see the truth of the situation on the web-site and  although I=
=0D
believed that it was wrong (and a violation of human rights as it  was
genetic=0D
discrimination) that it was still better to tell the truth than  have a l=
ie.=0D
 =0D
If we had known that Annie would only be provided with  supportive care,
then=0D
we would have managed her health in a different way. I  think that we wou=
ld=0D
have just taken her home and hoped for the  best.=0D
 =0D
Today, the definition has vanished, but I managed to find the  cached=0D
version. I am pleased to provide it privately to anyone who is  intereste=
d.=0D
 =0D
Irene, you asked about a child with a very rare chromosomal  diagnosis wh=
o=0D
was being provided with excellent care in Canada.=0D
 =0D
I have  a few guesses as to why that might be.=0D
 =0D
First, Annie relieved excellent  supportive care. Her hypoglycemia was=0D
extremely well managed by everyone. They  were really pushing for a g-tub=
e
so that=0D
was a surgery that was offered. But  when her "natural" life was threaten=
ed
by=0D
skyrocketing CO2 levels, they did  not investigate the cause. The told us
her=0D
trachea was fine and it was not  until after she died that we learned of =
the=0D
critical CO2 and Bicarbs.=0D
 =0D
Another possibility is that the rare chromosomal disorders may not  have=0D
statistics. Trisomy 13 and 18 =3D lethal. It is that simple. For doctors =
 who
are=0D
supposed to be so smart, for some reason they can't look beyond that.=0D
 =0D
It is a mystery to me why this description was added and an equal  myster=
y=0D
why it was suddenly removed when I found it and congratulated them for=20
telling=0D
the truth.=0D
 =0D
Barb=0D
 =0D
 =0D
 =0D
 =0D
 =0D
 =0D
 =0D
**************Ideas to please picky eaters. Watch video on AOL Living.=0D
(http://living.aol
com/video/how-to-please-your-picky-eater/rachel-campos-duffy/=0D
2050827?NCID=3Daolcmp00300000002598)=0D
 =0D
 =0D
                  Building ___ooOOoo__ Rainbows=0D
                       www.trisomyonline.org=0D
                  Families Helping Families On-line=0D
 =0D
 =0D
 =0D
--=0D
No virus found in this incoming message.=0D
Checked by AVG Free Edition.=0D
Version: 7.5.516 / Virus Database: 269.20.7/1283 - Release Date: 16/02/20=
08
2:16 PM=0D
 =0D
=2E


-- Binary/unsupported file stripped by Ecartis --
-- Type: image/gif
-- File: butt_11_tile.gif


-- Binary/unsupported file stripped by Ecartis --
-- Type: image/gif
-- File: butt_11.gif


-- Binary/unsupported file stripped by Ecartis --
-- Type: image/gif
-- File: IMSTP9.gif


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

Other related posts: