A F ALS THERAPY DEVELOPMENT FOUNDATION STEPHEN HEYWOOD ALS THERAPY DEVELOPMENT FOUNDATION STEPHEN HEYWOOD
Stephen Heywood, designer-builder diagnosed with ALS at 29. (PRNewsFoto/ALS Therapy Development Foundation)[RV]
CAMBRIDGE, MA UNITED ...
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: http://www.newscom.com/cgi-bin/prnh/20061127/NYM223 )
Saturday, November 25, 12:49 PM
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.
Sunday, November 26, 11:03 PM
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.
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 -- http://www.als.net
PatientsLikeMe -- http://www.patientslikeme.com
Cyberkinetics -- http://www.cyberkineticsinc.com
So Much So Fast -- http://www.somuchsofast.com
His Brothers Keeper -- http://www.jonathanweiner.com
CONTACT: James Heywood / Anthony Bernal
617-441-7222 / 617-733-3525
SOURCE ALS Therapy Development Foundation