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Stephen Heywood, son of MIT mechanical engineering professor John B. Heywood, died Sunday, Nov. 26 in Newton-Wellesley Hospital. He was 37.
Stephen Heywood's eight-year battle with Lou Gehrig's disease was featured in the book "His Brother's Keeper" and in the recent documentary, "So Much, So Fast."
Heywood died two days after his ventilator became accidentally disconnected, according to his family.
John Heywood is director of MIT's Sloan Automotive Lab and the Sun Jae Professor of Mechanical Engineering.
Stephen Heywood, a strapping 6-foot-3-inch carpenter, was restoring his dream house in Palo Alto, Calif., in 1998 when he was diagnosed with amyotrophic lateral sclerosis (ALS), a neuromuscular illness that gradually destroys the central nervous system. ALS is also known as Lou Gehrig's disease, in honor of the New York Yankees first baseman who died of ALS in 1941.
Upon learning of his younger brother's illness, Stephen's brother Jamie, a 1991 MIT graduate, abandoned his career in technology development at the Neurosciences Institute outside San Diego to create a foundation to hasten potential clinical applications of basic ALS research. Now the largest worldwide test factory for possible medications and treatments of ALS, the ALS Therapy Development Foundation has 13 full-time scientists and $20 million in funding.
After his diagnosis, Stephen Heywood moved to Newton, Mass., to be close to his tight-knit family, who all participated in his care as his paralysis progressed. He was eventually forced to use a wheelchair and to communicate via an implant in his brain that allowed him to move a cursor on a computer screen, similar to the method used by fellow ALS sufferer Stephen Hawking, the renowned British physicist.
The Heywood story inspired a book, "His Brother's Keeper," written by Pulitzer Prize-winner Jonathan Weiner, and a wide range of media coverage. In a film completed last year, Newton-based filmmakers Steven Ascher and Jeanne Jordan captured Heywood's physical deterioration in an intimate family portrait while documenting its effects on his relationships, especially with his wife, Wendy, and his brother Jamie.
"Stephen is gone, left in our hearts and in the relationships and structures he has built," Jamie wrote in an e-mail message to friends soon after he learned of his brother's death at Newton-Wellesley Hospital. "Stephen was in command of his world and his body at all times and never lived life on anything other than his own terms."
"Stephen's real work, of course, was to raise awareness of ALS, to spur his brother's research work, and to live a rich and considered life in spite of cruel odds," Burr wrote.
He is survived by his wife, Wendy, and son, Alexander.
A memorial service will be held Sunday, Dec. 3, at 3 p.m. at Grace Episcopal Church, 76 Eldredge St., Newton Corner.