[tri-med] Re: update on Annie

Thanks for your encouragement, Jennifer.
Maybe Annie's purpose was to help other kids. All that we asked was for her to 
have a chance if it seemed feasible, and otherwise, a dignified death. Nobody 
ever suggested that there were too many things wrong to fix. To this day, we 
don't know what was wrong with Annie or whether she could be fixed. There is 
something not right about that. 

All the best to you,
Barb





> From: phil46@xxxxxxxxxxxx
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Re: update on Annie
> Date: Wed, 28 May 2008 09:32:42 -0600
> 
> Fantastic!  I hope all goes well.  We appreciate you, being on the front
> lines in the battle for good medical treatment for our kids.
> 
> God bless.
> Jennifer Vanderbeek
> Meridian, ID
> Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife to
> Andrew
> 
> Visity Elanor's Caringbridge site at:
> 
> http://www.caringbridge.org/visit/elanoranne 
> 
> 
> 
> 
> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
> Behalf Of Barbara Farlow
> Sent: Tuesday, May 27, 2008 8:31 PM
> To: tri med lists
> Subject: [tri-med] update on Annie
> 
> Hello friends,
> I am telling Annie's story at the University of Toronto's Joint Centre for
> Bioethics on June 11th.(announcement below) I will also be presenting a
> poster at the Seattle Children's Ethics conference. The theme this year is
> Ethics and Genetic Testing. The director of ethics, Dr. Ben Wilfond, is the
> author of the paper "Lethal Language, Lethal Decisions" which addresses the
> fact that tri 13/18 are not always lethal conditions but that the language
> of lethality is used to define a quality of life decision. 
> 
> I hope that all of these endeavors ultimately lead to improvements in the
> non-judgmental provision of care for our special children. 
> 
> Barb  
> Annie's mom May 25, 2005- Aug 12, 2005. 
> 
> 
> 
> 
>  
> 
> 
> 
> First Annual Sue MacRae Lecture
> 
> On Ethics and
> Patient-Centred Care
> 
>  
> 
> (THIS SEMINAR WILL ALSO BE WEBCAST)
> 
> (http://epresence.ehealthinnovation.org/epresence)
> 
>  
> 
>  
> 
> "Making Tough Decisions Together:  A
> Family's Perspective of the Vital Importance of Ethics and
> Patient-Centred Care"
> 
>  
> 
>  
> 
> Barbara Farlow, BEngSci, MBA
> 
> Member,
> Patients for Patient Safety Canada
> 
>  
> 
> Wednesday, 11 June 2008, 4:10 - 5:00 pm
> 
>  
> 
> University
>  of Toronto
> Joint Centre for Bioethics
> 
> 88 College St.,
> Great Hall
> 
> Abstract:   Following
> the tragic death of a loved one, a family seeks healing by struggling to
> define
> ethics and patient centred care and by attempting to understand why there
> seemed
> to be an absence of both in their circumstance.  The lecture is an account
> of a journey of trying to affect improvements in ethics and patient-centred
> care, especially in situations pertaining to end-of-life and quality-of-life
> valuations.  
> 
> Admission Free   -   No Registration
> Required
> 
>  
> 
>  
> 
> *************************************************
> 
> Rhonda
> L.F. Martin
> 
> Executive
> Assistant to Dr. Ross E.G. Upshur,
> 
>   
> Director, University
>  of Toronto Joint Centre
> for Bioethics
> 
> Administrative
> Assistant to Dr. Jennifer L. Gibson,
> 
>   
> Director, Partnerships & Strategy
> 
> University
>  of Toronto Joint Centre
> for Bioethics
> 
> 88 College Street
> 
> Toronto,
>  Ontario
> 
> M5G
> 1L4
> 
> CANADA
> 
> ( Tel:  416-978-1906
> 
> 9 Fax: 
> 416-978-1911
> 
> 8 E-mail:  rhonda.martin@xxxxxxxxxxx
> 
> Website: 
> www.utoronto.ca/jcb
> 
> *************************************************
> 
>  
> 
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>  
> 
> 
> 
> 
> 
> 
> 
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