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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).
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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.org 992 Hershey Road Elizabethtown, Pa 17022
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