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:
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 :-)