During the past several years, Stephen Heywood allowed stem cells to be injected into his spinal column, participated in clinical trials for new drugs and genetic studies, and received an implant in his brain as part of an experiment in how thoughts can be used to control a wheelchair and other robotic objects.
Just as the 37-year-old father from Newton, Mass., gave his body to science in the waning years of his life – even allowing himself to be the subject of the recently released, critically acclaimed documentary “So Much So Fast” – he submitted himself to science in death as well.
Eight years after being diagnosed with ALS, the degenerative neurological disorder also known as Lou Gehrig's disease, Mr. Heywood's ventilator became disconnected Nov. 28, leaving him brain dead. His body survived for two days, long enough for his kidneys to be donated to two patients, relatives said.
In addition to the documentary, Mr. Heywood and his brother Jamie have been the subject of features in The New Yorker, on “60 Minutes,” and in a book titled “His Brother's Keeper.”
They chronicled how Jamie Heywood, a mechanical engineer without medical training, quit his job to seek a cure for ALS. He set up a foundation, raised millions of dollars, established a research laboratory, recruited scientists, and spent the last several years engaging in “guerrilla research” in a desperate effort to test a range of drugs, including those approved for other diseases.
“Stephen used to talk about how I gave him a gift in all the work we did on ALS,” his brother said. “But what most people don't understand is that really he gave me the gift. ... Stephen's disease will change ... the way therapies are developed. His illness is a lens to make the process of discovering therapies better. His humanity gives the moral authority to fight the battles to fix the system.”
Born in Newton, Stephen Heywood graduated from Newton North High School in 1987, his brother said. He studied English and art at Colgate University in Hamilton, N.Y., graduating in 1992.
Over the following six years, he worked in construction and forged a career in California by designing and building houses in a distinct way. His brother called him “an artist-builder.”
“He felt how you formed the wood was a higher art than the actual architecture,” Jamie Heywood said.
Mr. Heywood was diagnosed with ALS in 1998 and returned to Newton. He was married in 2000 and had a son, Alexander.
“The thing about Stephen that's the most wonderful, valuable thing about him was that he always said the right thing,” said his wife, Wendy. “He made you feel special, that he knew you through and through. He had a sort of Zen knowing. He said everything straight.
“He had the capacity to love everybody, for who they were. He never wanted to change them.”
Even as his ALS progressed toward paralysis, he built three houses, including his own. His brother said he trained apprentice craftsmen when he could no longer use his hands and inspired others to imagine and build his designs when he could no longer use his voice.
In 1999, his brother founded ALS TDF, what he calls the world's first nonprofit biotechnology company. Mr. Heywood's other brother, Ben, also of Newton, and a friend started another company, Patients-LikeMe, allowing Mr. Heywood and other patients to share their disease progression and treatment regimens online.
“Stephen inspired those around him to imagine the impossible and then quietly challenged them to make it reality,” Jamie Heywood said. “Though Stephen's ALS was advanced, no one thought of him as a dying man. He inspired thousands of ALS patients, not by fighting or living defiantly against the disease, but by simply making it inconsequential. ... Stephen lived his life and forgot his disease.”
Besides his wife, son and brothers, Mr. Heywood leaves his parents, John and Peggy of Newton.
