The backstory, part 2

Last Friday we met my aunt Patti in part 1 of the fund-raising backstory.  Today I'll introduce my cousin Garrett, the oldest son of my dad's youngest brother.

AT, CMT, Garrett, and Cousin J at the Liberty Bell

Garrett was born happy and healthy, but by the age of five he was developing scoliosis and having trouble walking.  The early similarities to Patti's condition were obvious, but it wasn't until 1997, when a genetic test for Friedreich's ataxia became available, that the diagnosis was confirmed.  The gene for FA is recessive, meaning both parents must be carriers to have a symptomatic child.  It is remarkable that two sets of carriers, my grandparents and Garrett's parents, found each other in successive generations.



P (college buddy/FARA super-fundraiser) and Garrett

Garrett was using a wheelchair full time when he enrolled at the University of Illinois.  With an electric chair, an accessible campus, and a strong rehab program, Garrett enjoyed the same independence that all college kids crave.  As his symptoms progressed his teachers wore FM transmitters so he could hear the lecture, he used note takers during class and dictated his homework assignments.  When it became impossible to pursue computer science, his main academic interest, he switched majors and earned a degree in Finance.  Garrett always found a way to achieve his goals through technology, ingenuity, or shear brute force.

 

Watching the Phillies beat the Nationals in D.C.

Garrett loves sports!  He continues to follow U of I football and go to games when the Illini play Penn State.  He also cheers for the Philadelphia Eagles and his true love, the Phillies.  Their ball park is short commute from his apartment and when he could no longer see the field, his family worked out a series of hand signals to provide the play-by-play.  The roar of the crowd is also a sure sign that something good just happened!

Cousin J and Garrett at an Ataxia Ride, October 2010

I'm not sure how much Garrett knows about this fund-raiser.  I spoke with his parents before I began, and I'm sure they tried to tell him, but his advanced speech, hearing, and vision loss make it almost impossible to communicate.  No one understands the current lack of treatment options for FA patients better than Garrett.  But he firmly believes that the research efforts FARA supports will find a cure for Friedreich's ataxia.  Soon.