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

Our prayers go out to you Catherine to have the strength to deal with you l=
oss.=E2=80=A6

Mohammed, Rana, Hamzeh and sweet Nejoud (2-yrs old, T-18)=20


-----Original Message-----
>From: Catherine Trewin <ctrewin@xxxxxxxxxxxx>
>Sent: Mar 22, 2008 1:58 PM
>To: tri-med@xxxxxxxxxxxxx, Livingwithtrisomy13@xxxxxxxxxxxxxxx
>Subject: [tri-med] Very Sad News from David and Raeline
>
>I received this, this morning.
>
>
>Hi Catherine.  I have bad news.  Claire passed away on March 14.  Her lung=
s
>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 kn=
ow
>the results yet.  They would not take any organs because she was T-13.  (H=
er
>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 concer=
n.
>
>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 wi=
sh
>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)
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>5:52 PM
>
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>                       www.trisomyonline.org
>                  Families Helping Families On-line
>


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