[tri-med] Re: Very Sad News from David and Raeline

I am sure she is still happy playing with the angels. It looks like her parents 
did everything that was in their hands. They have reserved a spot in heaven for 
themselves for taking on such a challenging role and loving their little girl 
while working hard to keep her healthy.
 
Proud mother of baby Kira (18 months)partial trisomy 7p and trisomy 10q, and 
she loves to talk.


----- Original Message ----
From: Jocelyn jknowd@xxxxxxxxxx
To: tri-med@xxxxxxxxxxxxx
Sent: Sunday, March 23, 2008 9:02:05 PM
Subject: [tri-med] Re: Very Sad News from David and Raeline

Heartfelt sympathy to Claire's family at this sad time.

At 04:58 AM 23/03/2008, you wrote:
>I received this, this morning.
>
>
>Hi Catherine.  I have bad news.  Claire passed away on March 14.  Her lungs
>were what failed.  We are very sad.  The hospital did all they could.  We
>are comforted by friends and relatives.  They have done an autopsy on her
>lungs.  Maybe they will find something that will help others.  We don't know
>the results yet.  They would not take any organs because she was T-13.  (Her
>heart doctor, who saw Claire every six months, was one of the intensivists
>in ICU.  She had said that if Claire makes it, Claire would never have to
>see her again because her heart was performing so well.)  They would have
>taken her corneas and heart valves if she had not been on the ventilator.
>
>Thanks for your help in locating resources for Claire, and for your concern.
>
>We discovered in November that Claire had something called a chiari
>malformation.  Among other things, it restricts the flow of spinal fluid
>back into the brain.  The reason I'm telling you this is because there are
>behaviours associated with this condition.  (There are also physical
>effects.)  You mentioned that Monika's parents are struggling with
>behaviours.  Now I know that there is a danger that parents of a child (us)
>may tend to think that their child's problems may be the same as other
>children's problems, so I won't put too much weight on it, but it would be
>worth checking into.  Aside from the headaches and other pains which of
>course influence behaviour, especially in a non-verbal child, is something
>called paroxysmal rage.  Monika's parents may want to check it out.  We wish
>we had known about this years ago.  An informative website is
>http://www.chiaricare.com/.  Monika's parents are welcome to contact us by
>e-mail or by phone.  Our phone number is (deleted)
>
>David Smith (davidmsmith@xxxxxxxxxxxxxxx)
>No virus found in this outgoing message.
>Checked by AVG.
>Version: 7.5.519 / Virus Database: 269.21.8/1338 - Release Date: 3/21/08
>5:52 PM
>
>                  Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                  Families Helping Families On-line
>
>
>
>
>--
>No virus found in this incoming message.
>Checked by AVG.
>Version: 7.5.519 / Virus Database: 269.21.8/1337 - Release Date: 
>20/03/2008 8:10 PM

Jocelyn, loving Nanna to Tess with Trisomy 18, age 11 years
. 

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


      
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