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More than just a story about family, but a story about relentless drive to live as full of a life as possible, this piece published by TODAY tells the journey of a young boy who grew to be a man before his passing living with Friedreich’s ataxia
. Recounting his life and the limits he never placed on it, Bennett's book tell his personal story.
Phillip Bennett loved the idea of being a journalist. Organizing his thoughts in writing was a balm to him; saying what he needed to say quieted the riot in his mind.
Settling in for the writing process was a process of its own. Throughout his early 20s, the journalism major needed his mom to get him out of bed, dress him, feed him, position him in his wheelchair, and adjust the special brace he wore to support his lone typing implement — his index finger.
Bennett spent more than two years pecking away at his own intensely personal exposé: An account of what it’s like to live with Friedreich’s ataxia, a rare neuromuscular disease that affects roughly one in 50,000 people in the United States and has no known cure or treatment. His book, “Living the Decision: A Pocket Guide to Cramming 72 Years into 27,” just got published in December — but Bennett didn’t live long enough to see his name in print on the book cover. (Photo courtesy of TODAY via Valeria Bennett).
Read the rest; it's a worth the read.
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