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FARAFARA Cure FA

Thomas Barnett

March 3, 1985 - June 5, 2007

Thomas lived 22 years with Freidreich’s Ataxia. A prize winning artist, and digital graphic designer with an encyclopedic knowledge of Star Trek minutia and Jeopardy style trivia, Thomas also had an encyclopedic understanding of loss; of the ability to walk or hold a pencil or a paint brush, to exercise control over his daily circumstances, of social contact and interaction imposed by the physical limitations of the progressively handicapping neuromuscular degeneration of Friedreich's Ataxia.

Thomas enjoyed a "usual" early childhood. The first sign that something was not right was the goose stepping run he displayed on the way to first base during T-ball. The discovery of lost lower extremity reflexes at age 10 led to a clinical diagnosis, confirmed the next year when genetic testing for Friedreich’s Ataxia became widely available. By high school, Thomas was no longer ambulatory, he underwent surgery to stabilize scoliosis, struggled to make his speech understood, coped with the often overwhelming fatigue of the demands of decreasing heart efficiency and the energy required to move without good coordination of voluntary movement and willed his way to graduation with honors and scholarships to pay for his college education.

Thomas enrolled at Elon University as a digital art major, lived on campus with the assistance of home health aids and student personal attendants, maintained a 4.0 GPA, spent a semester abroad in Australia, was one of fifteen finalists in the national juried VSA arts competition in 2005, and designed the web site http://access.unc.edu for a University of North Carolina project that surveyed the accessibility of all public universities in North Carolina. On May 18, 2007, Thomas was honored by Elon University as the first student to ever be named the recipient of the Elon Medallion for his contributions to the University as honors arts fellow, and advocate for universal access.

On track to graduate with honors in 2007, Thomas suffered a catastrophic stroke precipitated by the declining heart function engendered by Friedreich's Ataxia in October of his senior year. Thomas Barnett passed away on June 5, 2007. We will always miss him — his determination, wit, intellect and sardonic grin. He leaves a lasting legacy through his work that will enable countless other students facing physical disability challenges to access higher education, achieve, and contribute in their field of focus.

 


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