American carpenter and craftsman diagnosed with amyotrophic lateral sclerosis (ALS known as Lou Gehrig’s disease) at age 29. He and his family were the subjects of a 2004 book and a 2006 documentary that portrayed their struggle with this wasting and fatal disease.
Stephen was the second of three sons born to John and Peggy Heywood. Their mom, Peggy, was a psychiatric social worker, and their British-born dad is a mechanical engineering professor at MIT (Massachusetts Institute of Technology). All three boys earned their engineering degrees from MIT. The oldest brother, Jamie became an entrepreneurial businessman. Stephen was the artist in the family, drawing and painting as a kid and then drifting into carpentry and construction work. The healthy 6’3” craftsman/carpenter drove a customized Harley-Davidson motorcycle. In 1997, Stephen and his younger brother, Ben, bought a run-down house to renovate and re-sell. Stephen approached the construction project as a work of art, and the close family all pitched in. In February 1998, Stephen sold the house for almost a million dollars, at a 300% profit.
The family gathered round their middle son when he learned in December 1998 that he had ALS. He had recently undergone medical testing to determine why his hand had seemed to weaken. The lengthy, painful hospital tests indicated neurological damage in all four limbs. The disease, first identified by the French neurologist Jean-Martin Charcot in the 19th century, is equivalent to a death sentence with life expectancy after onset of about five years. The cause of the illness is little understood, with only about 10% of the cases being inherited. Stephen’s case was of the non-inherited variety.
Shortly after he heard the alarming news, Stephen’s oldest brother Jamie left his job at a brain research institute in San Diego, and moved his family back to the Boston area to help his brother fight for his life. He established the ALS Therapy Development Foundation in April 1999, a combination biotech company and research foundation. Within a few months he raised private research funds in excess of $500,000. Jamie describes his brother as a lynchpin for the project. Stephen once said that if he had a choice, he would still endure the disease even if he died from it because his brother’s work has done so much to bring a cure. With characteristic strength and matter-of-factness, Stephen subjected himself to trial protocols and medication in an attempt to improve the quality of ALS sufferers’ lives or cure the devastating illness altogether.
At around the time of his initial diagnosis, Stephen had begun dating Wendy Stacy, an administrator at Harvard University biology laboratories, and their love deepened. They married in February 2000, with Stephen’s condition worsening to an unsteady gait, a useless right arm and a weakened left arm. Their son, Alexander, was born in late 2000. In 2004, Stephen’s story became the basis for a book “His Brother’s Keeper: A Story from the Edge of Medicine,” written by Jonathan Weiner, a Pulitzer Prize-winning science writer. The book became a New York Times notable book for the year. A filmmaking group had begun filming Stephen and the family shortly after diagnosis. Their documentary “So Much So Fast” was shown at the Sundance Film Festival in January 2006. The film portrays Stephen’s courage, humor and occasional despair along with Jamie’s rush to find a way to save the lives of his brother and his fellow sufferers. In the documentary, Stephen is asked what he would have done differently. With good humor he promptly retorted: “Have more sex on film.”
Just as the course of his life led to extraordinary acts, so too did the course of his death. On November 25, 2006, Heywood was declared brain-dead when he lost the use of his ventilator. He was kept alive for two days, allowing him to donate his kidneys. Heywood’s battle with ALS officially ended on November 27, 2006. He was 37.
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