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FARAFARA Cure FA

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.

Benj’s Make-A-Wish was to the premiere of movie The Return of the King, the 3rd movie in the “Lord of the Rings” series. That was the high point of his life. He met all of the actors, went to the movie screening and then to the after-party. A picture of Benj with Liv Tyler was taken and he used it as my computer screen saver. At age 20, he had spinal Fusion surgery. Benj was so excited to both sit up straight and to be 4 inches taller. He was ready to rule the world. Unfortunately, while the surgery was a great success, Benj began multi-organ shut down 3 days after. On day 11, Benj’s mother had the doctors remove life support. Benj’s mother generously donated his organs for Friedreich’s Ataxia research. Benj’s heart tissue gave Dr. Arnulf Koeppen the information he needed to further his research concerning iron accumulation in the heart. 

For more information on organ donation for Friedreich’s Ataxia research, contact Benj’s mom at:

Mary-Lisa Orth
FARA
Organ and Tissue Donation Liaison
Rocketmom@att.net
Mary-Lisa.Orth@curefa.org
520-616-9883

 

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