Many at MIT already know the story of Stephen Heywood, son of Professor John Heywood of mechanical engineering, who has been fighting a seven-year battle with Lou Gehrig's disease. The tragedy has drawn in the whole tightknit Heywood family, particularly Stephen's brother Jamie, MIT Class of 1991, who abandoned his own career to focus on finding a cure.
Last year the Heywood story spawned a book, "His Brother's Keeper," written by Jonathan Weiner and published by HarperCollins, and in April, WCVB-TV's "Chronicle" did a segment. Now, a team of filmmakers are making a documentary on the family. All of which focuses new attention on what remains an incurable, fatal disease.
Although Stephen's physical condition has declined unrelentingly, his mind is as sharp as ever. There are glimmers of hope: already he has outlived most ALS sufferers. His brother's ALS Therapy Development Foundation continues to experiment with potential treatments. Confined to a wheelchair and unable to speak, Stephen communicates via a computer similar to that used by fellow ALS sufferer Stephen Hawking, the renowned British physicist. "One learns," says his father, one of the world's leading experts on internal combustion engines. "to have conversations where answers are 'yes' or 'no.' "
Stephen Heywood was a strapping 6-foot-3-inch carpenter working on restoring his dream house in Palo Alto, Calif., when he was diagnosed with amyotrophic lateral sclerosis (ALS), a neuromuscular illness that gradually destroys the central nervous system.Â
Stephen and his older brother Jamie had always been close. A mechanical engineer turned high-tech entrepreneur, Jamie was heading up technology development at the Neurosciences Institute outside San Diego when his brother got sick. Within a few months, he quit his job, returned to Boston and threw himself into the burgeoning world of genetic engineering.
Jamie had no medical training, but he did have boundless energy, an entrepreneur's confidence and drive and an intense passion for the cause. He initially focused his efforts on an experimental gene therapy, but after the death of a patient undergoing similar genetic treatments made news headlines all over the world, he shifted his focus, first to neurovaccines, then to stem cells and ultimately to drug development.
Weiner, a Pulitzer Prize-winning science writer, heard about Jamie's race to save his brother and became immersed in the story. He wrote a lengthy New Yorker article, followed by "His Brother's Keeper"--a New York Times notable book for 2004.
"The Heywoods' story taught me many things about the nature of healing in the new millennium," he wrote. "It also taught me about what has not changed since the time of the ancients......what Lucretius calls 'the everliving wound of love.' "
Today, Jamie's foundation is the largest worldwide test factory for possible medications and treatments of ALS in the world, with 13 full-time scientists on staff and $20 million in funding.Â
"The foundation has become the machine Jamie always envisioned," Stephen wrote in a recent letter posted on his web site. "I think we have doubled the number of mouse trials ever done and have two drugs in human trials. We have tested every conceivable drug and have started to make our own."
When Stephen was initially diagnosed with ALS, he had just met up again with an old friend, Wendy Stacy, and the two had fallen in love. They married in 2000 and have a 4-year-old son, Alexander, who clearly dotes on his father.Â Â The three of them live in another house that Stephen had helped renovate, near his parents' home in Newton.
Though Stephen needs round-the clock medical care, all of the Heywoods are involved in taking care of him and they try to give each other a lot of emotional support. "This disease is impossible without family support," Stephen said recently. The family still makes its annual pilgrimage to the Outer Banks of North Carolina each summer, as they have been doing for 30 years.
Although Jamie has yet to find the magical cure for Stephen, their father says that his oldest son has broadened his view: "It's no longer just about saving Stephen, but about saving all the others who are going down the same path, and giving them a support network that helps them manage their disease."
A version of this article appeared in MIT Tech Talk on June 8, 2005 (download PDF).