Stephen Heywood 37, Dies; Subject of the 2006 Major Motion Picture - 'So Much So Fast'

Nov 27, 2006, 00:00 ET from ALS Therapy Development Foundation

    CAMBRIDGE, Mass., Nov. 27 /PRNewswire/ -- ALS Therapy Development
 Foundation CEO and d'Arbeloff Founding Director, James Allen Heywood,
 announces the sudden, accidental death of his brother, Stephen Heywood, 37.
     (Photo: )
     Newton, MA
     Saturday, November 25, 12:49 PM
     Dear Friends,
     Friday morning at 5:30 I received the call from Wendy that I have gone
 to bed each night hoping would never happen. I could tell from the sound of
 her voice that this one was different. When I arrived, their small street
 was lit up with the flashing lights of two fire trucks, an ambulance, and a
 police car. Going inside past Wendy holding Alex in her arms and into his
 bedroom, I found Stephen. His vent had disconnected, his lips were blue and
 despite aggressive CPR he looked peaceful perhaps with even a slight trace
 of a smile. I rode to Newton Wellesley with the ambulance driver who also
 grew up in Newton and remembered Stephen from other visits.
     Between Wendy, his caregiver and the EMT's, Stephen had CPR for over 40
 minutes. I don't know if it is because he forgot that he was sick or
 because his heart is larger and stronger than any I have ever known but it
 restarted. You could actually see the disbelief on the ER team's faces. You
 also knew that they were not sure this was a good thing because Stephen's
 eyes were not responding at all. They wanted to make sure we understood how
 bad it was but they missed Stephen's point as people often do.
     Stephen would tell a joke about wanting to die a heroic death. It went
 something like this. There would be a fire and he would save someone but it
 would have to be a slow fire with ramps because he would be in a
 wheelchair. I think he found a way to do that.
     There is no blood flow to either hemisphere of his brain and he has no
 EEG signals. Stephen is gone, left in our hearts and in the relationships
 and structures he built. Stephen was in command of his world and his body
 at all times and never lived life on anything other than his own terms.
 Thursday night before bed he sent an email to Ben saying how wonderful our
 Thanksgiving was; it was a wonderful Thanksgiving.
     Stephen has kept his body alive so that his family and friends could
 gather and say goodbye. As Stephen indicated he wanted to, he will donate
 his organs to others to give them a chance at the amazing years of life
 that he gave us. Sometime over the next few days if it is possible, some
 very lucky person will get his heart.
     So he found his slow fire and it has ramps.
     -- jamie
     Newton, MA
     Sunday, November 26, 11:03 PM
     Stephen Update
     This morning at 6:30 a.m. Stephen went into surgery after being
 declared legally brain dead. Wendy quietly sang "Arms of an Angel" by Sarah
 McLachlan, and then we walked him down as a group. His body fought for 2
 days to enable him to donate his organs in the best way. As I write this
 two patients, age 33 and 47, are receiving his kidneys and are being given
 a chance at life. Stephens's heart stopped at 7:36 a.m. My family was all
 together at our parents'.
     Stephen found a chance even in death to help others. He gave so much
 strength to so many.
     This does not end here. Together with Stephens's spirit continuing to
 guide us, we will take this disease apart and destroy it.
     -- jamie
               Stephen John Heywood, 37; Master-Builder/Architect
     NEWTON, Mass. -- From December 1998 when Stephen Heywood was diagnosed
 with ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease) to Sunday
 morning November 26, 2006 when he passed away with his family and friends
 Stephen lived a lifetime.
     As his ALS progressed toward complete paralysis, Stephen, a vigorous
 artist builder, began a journey that compressed time. Over the past eight
 years he built and rebuilt three homes, including his own and a carriage
 house that is more art than structure. He trained apprentice craftsmen when
 he could no longer use his hands. He inspired others to imagine and build
 his designs when he could no longer use his voice. Stephen took joy in the
 feel of the materials and the art of the forms as they became reality.
     Stephen married Wendy Stacy and together they built a family. They had
 a son, Alexander, in 2000 and together raised him to be a strong and caring
 child equipped with his first, full-sized power drill at the age of 2.
 Stephen was a most loving father and husband.
     In 1999, Stephen and his brother Jamie founded ALS TDF, the world's
 first non-profit biotechnology company, now widely recognized as the
 leading edge in a new breed of institutions that are changing how
 treatments are developed for disease. Today, ALS TDF is the world's leading
 ALS research center and has defined new standards for quality and effective
     Medically, Stephen's ALS progression was average for his age. Five
 years after diagnosis he opted for full-ventilator support to counter the
 degenerative effects of ALS. In 2000, he was the first patient in the world
 to receive a stem cells injection into the spinal fluid of his ventricle
 and lumbar cord. Stephen was resilient and often chose to participate in
 clinical trials for new drugs and genetic studies. And, for the last three
 years of his life was on an experimental drug discovered by the research
 team at ALS TDF.
     Stephen was the impetus for PatientsLikeMe, a new online collaborative
 medicine company founded in 2005 by his brother Ben and friend, Jeff Cole.
 PatientsLikeMe was built to allow Stephen and other patients to share their
 disease progression and treatment regimens. With Stephen's inspiration,
 PatientsLikeMe is working to empower patients with all diseases to share
 their medical information and experiences to help improve treatment
 outcomes and quality of life.
     Stephen embraced technology. His wheelchair, customized by his brother
 Jamie, is arguably the most advanced in the world with integrated power for
 his ventilator, computer, and even robotics which he could use to play with
 his son. Stephen was connected to his computer 24 hours a day enabling him
 to position any part of his body using the control system, and with the
 twitch of his jaw hit a variety of switches that kept him part of every
 conversation. The system ran Microsoft windows so every few hours or so
 Stephen would have to "reboot" himself.
     Stephen's belief in the redemptive power of technology lead him to be
 the first ALS patient to have a brain implant as part of a clinical trial
 by the company Cyberkinetics. He was not so much the subject of the trial
 as he was a member of the development team using his signature humor to
 prod and drive his fellow engineers to new advances. Stephen inspired those
 around him to imagine the impossible, and then quietly challenged them to
 make it reality. In his last weeks he was able to achieve for the first
 time multi-axis control of a virtual robot arm by just imagining motion.
     "Invincible." This is the word that has been used more than any other
 in the hundreds of emails received from around the world in the last day.
 Stephen's instant messenger and online handle were ALSKING and he was a
 constant presence on the phones and computers of his friends and family.
 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 -- it did not
 matter to him. There was no moment in Stephen's disease when he could not
 communicate and at no time was he not in control of every aspect of his
 life. Stephen lived his life and forgot his disease.
     On Wednesday, Stephen took Alex to the barber where they both received
 haircuts, and on to the pet store to buy food for Alex's pet snake. On
 their way home, as Stephen did every week, he bought flowers for his wife
 Wendy. The holiday was with his family and friends. Watching Alex play he
 said, through his computer, "I am very lucky." His last email at 10:20 p.m.
 was to his brother Ben: "We had wonderful Thanksgiving. Elliot is
 incredible (referring to Ben's four-month old daughter)."
     The cause of death was an accidental disconnection of his ventilator
 circuit at 5:00 a.m., the day after thanksgiving. The human and
 technological systems and backup systems failed. Between his wife Wendy,
 his caregiver and the EMT's, Stephen had CPR for over 40 minutes. Perhaps
 it is because his heart is so strong that it restarted despite the
 incredible odds against that happening. It was clear from the team at the
 hospital that his recovery was not necessarily a good thing because
 Stephen's eyes were not responding at all. There was no blood flow to
 either hemisphere of his brain and he had no EEG signals. Stephen was gone,
 left in the hearts of his family and friends and in the beauty of the
 structures he gave the world.
     Stephen is survived by his wife Wendy Stacy Heywood, a son, Alexander,
 parents John and Peggy Heywood and Brothers James and Benjamin (Sherie);
 and nieces Zoe and Elliot, all of Newton.
     A memorial service will take place at 3:00 p.m. on Sunday, December 3,
 2006 at Grace Episcopal Church, 76 Eldredge Street, Newton Corner, MA
     In lieu of flowers the family asks that donations be made to ALS
 Therapy Development Foundation, 215 First Street, Cambridge, MA 02142,
     Stephen and his brother Jamie have been covered in "The New Yorker,"
 "60 Minutes," "The Wall Street Journal," "The New York Times," "Science
 Magazine," and "The Economist."
     Pulitzer Prize winning author Jonathan Weiner wrote a biography of
 Stephen and a chronicle of the early foundation of ALS TDF, by his brother
 Jamie, in "His Brothers Keeper."
     Stephen's story is told in "So Much So Fast" a documentary now in
 limited nationwide release. Filmed over 4 years by Academy Award nominated
 Directors Steve Ascher and Jeanie Jordan, the Sundance celebrated film
 chronicles many of the amazing things Stephen has done and captures his
 humor, grace, and style in his own words.
      ALS TDF --
      PatientsLikeMe --
      Cyberkinetics --
      So Much So Fast --
      His Brothers Keeper --
     CONTACT:  James Heywood / Anthony Bernal
               617-441-7222  / 617-733-3525

SOURCE ALS Therapy Development Foundation