Sam Weyrich lives in Salt Lake City Utah with his mother, father, and older sister.
 Sam was born in July 2000 after an uneventful pregnancy and birth.  He was a
mildly lethargic and irritable infant.  During a four-month old well-check, the
doctor identified that Sam's eyes were not following light.  A subsequent MRI
revealed inadequate myelination (sheath covering the nerves) in his brain.  
Blood and DNA tests put Sam's diagnosis under the umbrella of demyelinating
diseases called leukodystrophies.   The specialists gave our family a grave
prognosis - Sam would not attain much function and probably die before age
two.   

Thankfully, Sam defies odds!  At age one, Sam became much less irritable and
his awesome full face smile emerged.  He struggles to perform activities of daily
life for himself and to even hold his body up but it is not for lack of his
determination.  Over the next few years and through multiple repetition and
therapy, Sam has taught himself to roll, walk in a gait trainer, propel himself in a
pool with the assistance of a life vest, balance himself on a horse, eat by mouth
when someone feeds him, use switches, and raise his hand to communicate yes.
 He always tries his very best.  

Sam's favorite activities are swimming and horse riding.  He loves listening to
music and watching movies.  He is very social and loves going to school and
generally being with others.  Sam's biggest passion is being around and
watching animals.

Sam's diagnosis currently stands as a rare neurologic disorder called
Aircardi-Goutieres Syndrome.  Right now, there are only about 50 known cases
of this syndrome in the world.   It has caused abnormal development of the white
matter of the brain and a clinical picture similar to what is seen with cerebral
palsy.  He has surpassed the early prognosis given to him but is still very limited
in all functions of daily life.  As other kids run around him and away from him,
Sam's whole body extends in an effort to join the kids in their fun.  He is a highly
motivated, happy and social young boy with a GREAT SMILE.  
Sam
You can send donations
to: ReGenesis Foundation
825 North 300 West
#w109
Salt Lake City, UT 84103
**put in the memo for
Joey's Breath of Life**