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    September  2009

 

  August                Alex/ Scott         October


Alex's Story

 

as told by her mom, Kim

 

Alex is 17 adopted as a 2.5yr old from Colombia, South America.  She has had a tough life. After arriving home with us she required open heart surgery to repair a rather substantial VSD -- post surgery she shot up, starting walking and has been the light of our life in every way.

 

At age 9 she started to have some balance issues and we started looking for a reason.... 3 yrs later we had a diagnosis that changed our lives... Alex was diagnosed with a recessive genetic disease called Niemann-Pick Type C -- there are only 500 cases diagnosed worldwide -- it is a progressive neurological disease for which there is no cure. She has already outlived 50% of patients with her diagnosis.  The symptoms displayed are similar to ALS and Alzheimers Disease.  Here is a link to more information:  www.parseghian.org

 
She is really interested in people, music, teen things... inside her failing body is a typical teen... compromised mentally but still a teen..
 
Also, if she could visit with senior citizens she would be most happy.... she LOVES old people :-)

 

October is National Niemann Pick C Awareness week....   http://www.nnpdf.org/

 
Thank you so much for reaching out to Alex..... she is an incredible kid facing incredible issues.

 

Alex with our aupair from Germany,

 

on her grandparents porch in NC

 

 

The whole family at the beach in SC in 2008.  (Alex has two little sisters both adopted from China).

 

 

 

 

 

 

 

 

September  2009 Feature


 

    

Name: Alex

Birthday: May 2, 1992

Diagnosis: NPC-- Niemann- Pick Disease Type C

Interests/Likes: People, Music, Teen Things

Updates On: Alex

Mailing Address:

 

Alex

C/O ShareaCard

992 Hershey Road

Elizabethtown, Pa. 17022

 

 



 

 

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