Stephen Heywood, 37; strove for ALS cure

Times Staff Writer

After the illness descended, promising to strip him of the ability to move his body, predicting a horrific death by suffocation, Stephen Heywood made a decision. He would live his life -- in spite of and because of -- Lou Gehrig's disease.

He married, fathered a baby, then allowed his life and his family's dogged search for a cure to be the subject of a book, a documentary film and news articles.

Through a nonprofit biotechnology laboratory set up by Heywood's brother, doctors pushed research onto a fast track, moving medicine from lab studies into human clinical trials in a bid to save Heywood's life -- and by extension those of others with Lou Gehrig's disease, or amyotrophic lateral sclerosis, a rare and fatal neurodegenerative malady.

Heywood was a willing participant in the research, trying medicines and potential treatments.

"I told my mom six months ago if I could choose not to have this disease, I couldn't do it because I -- I know what's going to happen because of this," he told a reporter for CBS' "60 Minutes II" in 2000.

But for Heywood, the dream of a life-saving cure ended Nov. 24 at his home in Newton, Mass. As he slept, the ventilator that helped him breathe became disconnected, leaving him legally brain dead. He was 37.

For two days, his body remained alive, and during that time his organs were harvested and donated.

"Stephen is gone, left in our hearts and in the relationships and structures he has built," his brother Jamie Heywood wrote on the website for the ALS Therapy Development Foundation, which the Heywoods founded. "Stephen ... never lived life on anything other than his own terms."

In the years after his diagnosis, Heywood and his family came to represent the face of what has become known as "guerrilla research," the practice of laypeople promoting and funding research in the search for cures.

In 2004, the Heywoods' story was told by Pulitzer Prize-winning writer Jonathan Weiner in the book "His Brother's Keeper: A Story From the Edge of Medicine." The documentary "So Much So Fast" premiered at the Sundance Film Festival in January.

Stephen Heywood was born April 13, 1969, to Peggy and John Heywood. His father teaches engineering at the Massachusetts Institute of Technology, where both of Heywood's brothers earned their degrees.

But he chose a different route, studying art and English at Colgate University and graduating in 1992. He was, Jamie Heywood said in an interview, "the coolest guy in our family."

"He was an artist and a poet and he rode a Harley," Jamie said.

In 1998, Stephen was a 29-year-old designer-builder renovating a house in Palo Alto, when he noticed that he could not turn the key that he had placed in the lock. The key worked but his hand did not.

Eventually, he went to a doctor and was diagnosed with ALS. In people with the disease, motor neurons -- which normally send messages to muscles -- degenerate or die. The affected muscles weaken and atrophy, and eventually the person is left paralyzed. Death often results from respiratory failure.

After hearing the news, Jamie, a mechanical engineer with a promising future, quit his job in San Diego, moved back to his hometown and set up an office in the basement of his parents' home, the first move in his search for a cure.

Stephen Heywood gave his brother "two checks for $5,000 each and told him to think of what he was doing as a business," Weiner wrote in his book. "He did not expect Jamie to cure him, but he thought his brother might be able to slow down his disease -- maybe preserve him in the condition of the astrophysicist Stephen Hawking."

With the support of his family, Jamie threw his life into the search for a cure, attracting top-notch researchers and raising funds.

At the lab, researchers ran tests using mice. The soundtrack for their work was always a ticking clock; people diagnosed with ALS have a life expectancy of two to five years.

Another brother, Ben, created a privately funded company, PatientsLikeMe Inc., and a website,, that according to company literature is designed to provide patients who have life-changing illnesses with "access to the tools, information and experiences that they need to take control of their disease."

As the ALS progressed, Stephen personalized the illness for many, giving an honest depiction of his life as he gradually lost the ability to perform even the most common tasks.

"What's hard is needing help with something you could do by yourself the week before," he told a reporter for the Boston Globe in 2000. Just as he adjusted to the change, his condition would worsen.

As his body deteriorated, he continued to participate in the search for a cure. He was involved in experimental drug trials, tried a Chinese herb, underwent a stem cell treatment. He also had a chip implanted on his motor cortex that let him move a computer cursor, allowing him to communicate.

Even as he participated in the quest, Heywood was keenly aware that time was not on his side and that others might be the benefactors of his family's work.

"Do I believe it might help me? That's a tough question," he told the CBS reporter in 2000. "Do I believe my brother will have a significant impact on curing ALS? Absolutely."

By the end of his life, Heywood was in a wheelchair and had lost the use of his arms and the ability to talk. He was still able to send e-mails and had sent one about a wonderful Thanksgiving dinner.

It is not clear whether any of the treatments succeeded in extending his life.

But Heywood, who in addition to his brothers is survived by his wife, Wendy; son, Alex; and his parents, will continue to inspire the search for a cure or treatment that may save others.

What he offered was a clear view of what is wrong in medicine and the sense that they could make it right, Jamie Heywood said.

Two days after Heywood was declared brain dead, he gave two people another gift: his kidneys and an opportunity to live. "Stephen found a chance even in death to help others," Jamie said.

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