[tri-med] Re: Doctors who wanted to let child die did not act illegally

----- Original Message -----
From: "Mandy"
> Sorry if I'm out of line here but what gives a doctor the right to
decide.??...my personal thoughts would be...my child, my decision.This makes
me so damn angry

Medical school.
And whoever said parents had rights? IMHO parental rights are the biggest
myth that our society creates, there are none, unless its to blame the
parents. And thats just not from my trisomy experience, but as the parent of
a rebellious teenager who decided that she didn't want to obey house rules
(really bad ones - no drugs, no alcohol, a curfew, to attend school and no
boys staying over) and so left home. There was nothing that I could do
because "her" rights superseded mine and she was only 16.

Sorry, but yes I get just as mad. Its why I keep fighting to change the
system - sometimes I fight within the system and sometimes I do step
outside.

Annette, I am hoping that after today I will be able to say that if you were
in Australia they would not be allowed to place DNR based on her Trisomy
profile, that in fact it would be "illegal" for them to use the trisomy as a
diagnosis. The recommendations and discussion paper regarding genetic
discrimination are being launched today. Unfortunately I will not be able to
go to the launch :-((

I did have great hopes for these changes to the law here - but sadly I think
that a peak genetic body (here in Australia) will prevail in their lobbying.
They believe that children with trisomy conditions do not reflect the "real"
situation within the genetic community (they think that I and SOFT are silly
in trying to treat our kids - even asked me directly why I fought for Alex
when he "obviously had no quality of life - this from our supposed "support
organisation") and as a result that our submission will be ignored - say a
prayer for us, and for our children, that this hasn't happened. And if it
has - mmmm have you ever seen Karen mad??

Don't judge each day by the harvest you reap, but by the seeds you plant.
Robert Louis Stevenson

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

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

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