Fremont Man Triumphs Over Rare Disease, Premature Death In Posthumous Book

Phillip Bennett died at age 27 of an inherited disease but "Living WIth the Decision" celebrates his life and raises money to fight the condition.


After graduating from San Jose State with a degree in journalism, Fremont native Phillip Bennett dreamed of writing a book.

That dream came true in December with the release of Living the Decision, which is about his life-long battle with Friedreich’s ataxia — a rare neuromuscular disease that affects roughly one in 50,000 and currently has no known treatment or cure.

But Phillip was never able to see his name in print or read the thoughtful and supportive reviews his work has received.

He passed away from the same disease that inspired the active and positive life that he enjoyed despite his confinement to a wheel chair.

Phillip was roughly half way through Living the Decision: A pocket guide to cramming 72 years into 27 when he received his “honorable discharge papers,” as his mother Valerie bravely put it on his Facebook page following his death.

But he had provided enough material for his friend, Jaime Richards, and family members to continue his story and complete the book on his behalf. 

Living the Decision follows Phillip throughout a life that changed drastically when he was diagnosed with FA at age ten.

FA is a degenerative neuromuscular disease that results in loss of coordination and often times a heart condition called cardiomyopathy.

But being confined to a wheelchair did not stop Phillip from packing his life full of adventures. The book explores a life spent skydiving, rafting, rock climbing and loving his family.

Living the Decision is replete with Phillip’s witty commentary and first-hand accounts of laughter, joy, pain, struggle and grace, as well as stories collected from friends, fellow FA patients, college professors and online acquaintances.

“The book provides a glimpse into the life of someone who was physically limited but whose life was anything but," said his mother Valerie Bennett. 

In addition to putting life into perspective and encouraging others to take advantage of the time they are given, Phillip also endeavored to raise awareness of FA and funds for finding a cure.  

As such, 100 percent of his book’s proceeds are donated to the Friedreich's Ataxia Research Alliance (FARA), funding the Phillip Bennett Translational Research Award.

Get the book or read a review here.

Did you know Phillip or someone who has maintained a positive outlook in the face of great physical adversity? What have they taught you?


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