Stephen Heywood

 

Our sincere sympathy to his family on the passing of Stephen. I was shocked to read the letter. I never met Stephen but look forward to meet him in Heaven with Lou, Morrie and everyone. Debbie

This letter was written by Stephen's brother Jamie Heywood.

Saturday, November 25, 12:49 PM
From Jamie Heywood
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 min. 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 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


Sunday, November 26, 11:03 PM

Stephen Update

This morning at 6:30am 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 am. 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 research.

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, 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 PM 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 AM, 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 Zöe and Elliot all of Newton.

A memorial service will take place at 3:00 PM on Sunday, December 3, 2006 at Grace Episcopal Church, 76 Eldredge Street, Newton Center, MA 02458.

In lieu of flowers the family asks that donations be made to ALS Therapy Development Foundation, 215 First Street, Cambridge, MA 02142.

For those who are traveling, the ALS Therapy Development Foundation has arranged for a block of rooms at the Sheraton Newton Hotel. For your convenience, there will be a shuttle from the hotel to the church for the service. To make reservations, please call 888-627-7179 or click the link below for online reservations.