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In Memorium


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.


April 16, 1987 - March 12, 2007

Once upon a time, there was a little boy named Nicholas. He was a cheerful young boy with shiny red hair. He loved to go to the park and have his Mommy push him on the swing. Some of the slides were too tall for him, but others were fun to climb up and slide down. When he was 3 years old, he was happy to discover that he was getting a baby sister! He helped his Mommy look after her with love and attention. He enjoyed helping push her on the swings at the park; they shared the same stroller on their walks to and from their favorite park.

Benjamin Orth

July 20, 1983 - April 2, 2004

Benj and his identical twin began having trouble walking at age 16. They were diagnosed in January 2000. By the following year, they were using scooters then power wheelchairs. Benj loved playing tennis before he started falling, and then found that he could play again using a power chair. That made him feel normal again. He spent most of his free time talking trash about people – especially his family, and playing computer games like Neverwinter Nights. His constant companion was his cat, Cathead – she lived in his closet and only came out at night to sleep with him. At 17 pounds she ruled the house. Benj’s favorite movie, before Lord of the Rings, was Band of Brothers.

Kevin Maher

February 3, 1976 - November 30, 1996

Dear Friends,
My son Kevin had Friedreich's ataxia (FRDA). He was diagnosed when he was a seven-year-old second grader. Clumsiness was his only symptom. Kevin developed scoliosis (curvature of the spine) and the enlarged heart (hypertrophic cardiomyopathy) common with the diagnosis of Friedreich's ataxia. He used a wheelchair for mobility and a computer to write.

Kevin was a fighter and fought to the end. He graduated in the top ten of his high school class and was taking college correspondence classes (majoring in accounting) at the time of his death. He had a B+ average. He was an avid St. Louis Cardinals fan and could quote any statistic about them you wanted. He also loved country music.

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